It's unreal how this disease changes your perspective on life in so many ways. The most prevalent way that I notice how I have changed is that "Nothing is really that bad." Prior to May 1st, I had been to an Emergency Room a handful of times. I wish I had an exact count, but since May 1st, I have taken Brad to the ER approximately once per week. I estimate that I have been there with him at least 12 times. The most recent was 9/20, a Thursday night. Brad was actually having a decent day. Alexandra had come home from school and her and Brad went to go and sit in the driveway in the sun and talk. Stanley was of course right at their feet and they were throwing him his ball. Somehow Stanley got caught up in the tubing from Brad's D5 (sugar water) that goes into his pic line and pulled the pic line nearly all the way out of Brad's arm. We all looked at each other pretty calmly and said, "Ok, we are taking dad to the ER." Rachel drove him there while Alexandra and I finished up some things and gathered our homework and schoolwork to take with us, not knowing how late of a night it would be. We met up there and then Rachel left the ER to go back to school. We know the pic line nurses, Vicki, and Stephanie by their first names. Thankfully, it was only 4:30 pm and she had not left for the day. They paged her and she said she would be down by 6:15 pm and that is when she arrived. It is a sterile procedure so Alexandra and I left for the waiting room. Stephanie said, "We have had trouble before getting this inserted, so if I can't get it, Brad will have to come back tomorrow." I looked at her and said, "There were some troubles way back in June, but you will get it inserted." By 7:30 pm, Brad was done (success) and we were heading home.
On the drive home, Brad was feeling very nauseous. I remember feeling panicked in the car when the kids were little when they were going to vomit or already had. Now, it is commonplace whenever Brad is in the car that he will probably vomit. We have the bags ready and I had his nausea medicine in my purse that Alexandra gave to him while I was driving.
Several weeks ago now, Dean called me. I knew immediately something was awry because he never calls, only texts. I really think I can count two times he has called me in 6 months. In May, when he dislocated his finger playing basketball and on this particular day when he proceeded to tell me that as he was backing out of his friend's driveway he drove right into the door of his friend's parent's parked minivan. Well, good thing his 18-year old convertible is built like a tank because it barely had any damage! As he finished his explanation, he said, "Mom, are you mad?" I can honestly say, mad was the furthest thought from my mind. I was happy no one was hurt. Cars can be fixed. It is called an accident for a reason. It's not worth getting upset over.
Saturday 9/22, I was able to get away to take Alexandra homecoming dress shopping. She is not a fan of shopping, so she was quick to remind me as we pulled back in the driveway that after I had told her we would surely not be gone for 3 hours, that we had left at the house at 6 pm and were pulling in at 9 pm. (It takes 20 minutes to drive to the mall!) While shopping, I got a call from my dad and Dean who were at home with Brad to let me know that Brad had tripped and fallen walking from the chair to the bed. He was not injured, however, the needle from the tubing that inserts into his D5 bag had come disconnected. I took a deep breath, walked near a door where I could get better reception on my cell phone and explained what they both could do to fix it until I was able to finish up and get home. We finished our shopping without moving into panic mode. Brad had a scrape on his arm and leg but was otherwise ok.
The following week, Brad had 3 decent days in a row. We were all shocked. His voice was strong. He was sitting outside in the sun for several hours per day and even on a cooler day in the garage eating popsicles and chatting with family and friends. On one of those nights, I told Brad that I had been thinking and wondered what he thought about getting a 2nd opinion. Maybe the cancer isn't spreading as fast as we thought; maybe his body is fighting it. The bad thing about Brad's cancer is that none of the tumors can be seen on any scans. It is so frustrating that every dr. says, "We think it is spreading." I want proof, but we just can't get it. When I mentioned the 2nd opinion to Brad he said, "I have been thinking the same thing." So, we agreed to start the process and pursue it. That is a story in itself for another entry. Brad's last "decent day" was 9/27/2018. The next day he slept almost the entire day and lost what minute appetite he had. Since then, each day has progressively gotten a little worse. He is light-headed whenever he stands up and is passing out. Since he was taken off of TPN, he has lost a lot more weight and maybe if it's a good day, he consumes 200 calories. However, he vomits once per day, so we aren't sure how much is even being absorbed. I didn't realize the D5 barely has any calories at all. The purpose of it is to keep his blood sugar from dipping and sleeping all day.
On Sunday, Alexandra, Kathy, and I went to church. Rachel was home with Brad. When we got home I saw right away that Brad's chin was bleeding from a cut on one side and the other had a scratch. Neither Brad nor Rachel knew how he cut himself. Rachel said he was feeling light-headed coming back from the bathroom and kind of fell into bed, but neither of them knew he cut himself or hit anything. We moved more furniture around in the house so that we can maneuver the wheelchair in the bedroom on the main floor. From now on Brad needs to be pushed in the wheelchair as we don't want him falling and getting hurt. The hospice nurse offers many accommodations for Brad each week, however, he has refused nearly all of them as he wants to be independent. Last night was a turning point as I was helping him with a shower and he passed out. I could not completely catch him, but I did protect his head. He has now agreed to accept more help from the professionals so that assistance will start tomorrow.
I worked all of last week and tomorrow will be another full week, so we are all very thankful for the meals everyone is graciously providing. It is difficult to come home after work and accomplish everything that needs to be done, spend time with Brad, take care of his needs, and spend some time with the kids as well.
On a side note, Rachel has anxiously waited for a year to be in tugs (a very intense tug of war competition between sororities.) I can't describe INTENSE. She even went to a tugs weekend retreat for bonding and to learn techniques from "The Pond Guy." He has a tv show I guess. She practices several days per week. She keeps asking for duct tape, foam and medical tape. One day I overheard Brad giving her instructions about not duct taping this or that for fear of getting hurt. I was so thankful Brad was giving her guidance because I have no clue about this level of intensity with tug of war or that there even was such a thing. Well, yesterday afternoon I got the call that she was in severe pain all day in her ribs. I told her to go to Urgicare and get x-rays. So, she did, and yup, 2, maybe 3 fractured ribs. Brad, already being emotional from his fall, was starting to get upset about the news. I kept telling him that everything was going to be fine. She has a pain medication so she can still function through her college day and not be in pain. Things could be so much worse. Ribs will heal. I wanted to say, "The sky is not falling" but I didn't say it out loud. We are sitting here spending one more day together. Our friends just delivered a hot meal. Brad just opened a well wishes and thoughts of you card. I have more text messages of caring words from friends and loved ones than I can answer. Rachel had the time of her life participating in tugs up to this point. In the grand scheme of this cancer diagnosis, nothing is that bad.