She was an amazing person. She never complained. Denise was a Certified Illinois Assessing Officer, and worked in a township property tax assessor's office, when I met her, in August of 1982. She was a 28-year-old single parent, struggling to make ends meet. I remember her once admitting that she sometimes went for a week without eating, so she could feed her ten-year-old son, instead. She was a 98-pound size 1-, 5'6" tall, and made a lot of her own clothes. She was very bright, very realistic, hard-working, and fun-loving.
I was a very shy 25-year-old engineer. But when I saw her across the room, before I met her, I knew I had to meet her. I actually followed her to the restroom and waited outside for her. It took all of my courage, but I stopped her and just told her that I felt I had to meet her. We were together every day, after that.
In 1984, we both quit our jobs and started a company together, to create a software package to automate assessor's offices. We worked at least sixteen hours a day together, seven days a week, for years. (We were together almost all of the time, except for one night, from then until after she got cancer.) We did quite well, and the software is still in use throughout Illinois. Along the way, we had three beautiful children, and eventually moved from Illinois to my home town of Jasper, Indiana.
Life was good. I loved to take her camping, so she could see the spectacular places I had seen as a child. We both loved going to the mountains of Colorado, Wyoming, and everywhere out West, and to the ocean, in our old motorhome. Besides running our business, she also loved to cook. She once said she wanted to be remembered as "the lady in the neighborhood who made all of the good things to eat". She also loved to make things. She sewed, something she had learned as a child. She made all of the kids' Halloween costumes. She made them baby beds for their dolls, taking up woodworking along the way. She made them beautiful, exquisite dolls. She loved to garden and landscape, and turned our yard into a paradise of flowers. She also loved growing food, and she often canned or froze over five hundred quarts of food in a year. Neither one of us could stand any corn but homegrown, after we started growing and freezing our own. And she became almost famous for her homemade breads, especially the whole-wheat bread from my Mom and Grandmother's recipe.
After Denise was diagnosed with non-small-cell lung cancer, in March 1998 (on my birthday!), not much changed, for a while. We knew right away that the cancer had already spread, and that she had no chance of surviving. Statistics predicted she would live 4 to 6 months without treatment, or 9 to 13 months with treatment. She opted for treatment, because she wanted to be here with us as long as possible. She soon started chemotherapy, which started causing pretty bad side-effects, like pain, nausea, and fatigue. But she was still basically feeling like a well person.
Then, in June, when we were getting into bed at our hotel, during a trip to a hospital in Indianapolis, she suddenly felt a stabbing pain near the tumor on her adrenal gland, in her upper abdomen. It never went away. She was given every type of standard pain killer by our regular doctor, but nothing even dulled the pain. Within a week, we were back at the oncologist, and she was given a prescription for morphine tablets. They worked much better, but they caused her to have severe nausea.
The nausea and vomiting were constantly with her, for the next seven months, until she got into a study for a drug called Zyprexa, an already-available anti-psychotic with a side-effect of reducing opiate-induced nausea. At the sign-up for the study, she was vomiting while they were interviewing her! They gave her a pill, then and there, and she was NEVER nauseated again! It's too bad it took until mid-December to find it! One 5 mg pill every morning was all it took.
As the summer went on, the pain got gradually worse, and she gradually lost more and more weight. Her morphine dose was gradually increased. By the way, morphine is a wonder drug. Once her tolerance to a new dose-level developed, after a few days, she seemed perfectly normal, was able to drive a car, etc. Of course, the pain was never completely gone, and was usually still quite severe. We were told that the goal was to keep the pain at or below a 7, on a scale of 1 to 10.
In October, around our oldest child's birthday, Denise's pain suddenly intensified, and spread. Between October and December, her morphine dose had to be raised from about 300 mg per day to over 4000 mg per day, and that's only counting the time-release pills, not the handfuls of the instant-release ones for "in-between" times, for "breakthrough pain".
She started sleeping most of the time, like from 7 pm all the way through to 3:30 pm. She was gradually withdrawing from us. The wonderful Hospice nurse recommended a stimulant, so she wouldn't "sleep the rest of her life away", and she was prescribed Ritalin. That worked wonders, and we seemed to have our old Denise back again. Xanax also helped her. I remember the first time she took some, and she suddenly got up and started putting up Christmas decorations. This was actually BEFORE she had the Ritalin, and I was so amazed to see her up and going!
The pain was still intensifying, though, and she lost a lot more weight. She had stopped the chemo treatments, after they were shown to be doing no good, so her hair started to grow back, and I remember that she felt so much better without a wig on. She got so good at vomiting that she could turn and do it in mid-sentence, almost without missing a beat. (Poor baby!) FINALLY, in mid to late December, she got into the Zyprexa study, and the nausea was gone forever! WOW were we ever happy about THAT!
Near Christmas, she started having radiation treatments, for the pain. Around January 7th, after about ten treatments, the pain was completely GONE! She finally was pain-free and nausea-free! (For the record, she said the nausea was actually worse for her than the pain...)
After two or three days of happiness with no pain and no nausea, disaster struck! It was around midnight, and we were having a bowl of ice cream with strawberries on it, like the good old days, when she suddenly had a spasm in her arm, and literally flung the bowl onto the floor of the kitchen. She looked so surprised! I quickly gave her my bowl and told her to eat it, and started cleaning up the mess. She gobbled down the whole bowl, and went into the living room, while my back was turned.
It couldn't have been more than a minute or two until I noticed she was gone. I went into the living room and found her lying on the couch, vocalizing incoherently, with an expression of fear in her eyes. I was so afraid that she was going to die, right then. I had been told that the tumors were eroding the walls of her renal arteries, and her aorta. And I had asked what would happen if they burst. Would it be instant death? No, was the reply. It would take a minute or so if it was the aorta.
Well, thankfully, it wasn't that, at all. She progressed into a full blown seizure. After a minute or two, she was having great difficulty breathing. I knew she could still hear me, though, because when I told her that she'd be OK as long as she kept breathing, she started sucking in air as hard as she could. She started choking, so I tried to sit her up a little. Eventually, she was as rigid as a board, with only her head and feet touching the back of the couch and the floor. It lasted a LONG time, at least several more minutes, like that. The doctor came over, because I thought she was dying and had called him at home, less than five minutes away (but it took him over 20 minutes to arrive). By that time, she was conscious again, and seemed more or less OK. I got her into bed, and the next morning we went to a neurologist.
She had some pretty-severe memory problems, etc, for a day or so, but then was back to apparently perfectly normal. She was started on anti-seizure drugs, which were supposed to lower her brain pressure. An MRI scan confirmed our suspicions: The cancer had spread into at least four parts of her brain, with at least two tumors being larger than 1 cm.
And then all seemed well again! She was pain-free, nausea-free, mentally perfect, eating, and happy. But then, a day or two later, about three or four days after the seizure, she was standing behind me, helping me look in the closet for something for her to wear, when I heard her say "wo!". I then heard a very loud BANG, which shook the whole room. It was her head, hitting the floor. She had fallen straight over backwards. I thought she was dead again! But then she said "OWWW!", rather slowly and sheepishly, and almost laughed. She then seemed fine again, for the rest of the day, except for the bump on her head.
Later, however, she was in the bathroom, standing at the sink, while I was in the kitchen with my brother, at the opposite end of the house. We heard a HUGE bang, and the whole house shook! I ran to the bathroom, and she was on the floor. She had pitched forward and struck her head on the sink counter-top! An hour or two later, she came into the kitchen, and suddenly fell head-first to the floor, again! I was starting to see a pattern...
I started observing her very closely, while we were sitting on the living room couch. I noticed that things seemed to be slipping out of her hands, once in a while, and her head would bob down a little, sometimes. Eventually, it got more-pronounced and more-frequent, and I could finally see what was happening: She was having little "extra-parametal" seizures, which were not really seizures at all, but, rather, were more like someone just flipped a switch and turned her off, for a fraction of a second. And then she'd pop back on. Sometimes she would go for hours with no sign of this. But, eventually, it got much worse and more frequent. It started lasting up to a second, and happening every five seconds or so, sometimes.
All the while, I was racing around trying to make sure she wouldn't fall, or spill her drinks or food. She gradually accepted that she couldn't stand or walk by herself, or even sit up straight. I began walking her everywhere, holding her up. My Dad had his Mom's old wheelchair, and offered it, but Denise was horrified. However, within a few days, she tried it. I rigged a wide luggage strap around her, so she wouldn't pitch forward onto the floor, and she was able to wheel herself around the house, when the kids weren't fighting over who got to push her. She loved it, because she'd been confined to the couch or the bed for several days, by then.
During this time, we went back the the neurologist, because of the "mini-seizures". For the first time, I had a great deal of difficulty getting her to the medical complex. I had to try to hold her head up, in the car, and had a lot of trouble getting her out, and into the wheelchair, and into the building, etc. She was so embarrassed, because her head kept flopping over, and people were staring. Mentally, she was still 99+% fine, and she was mortified at what she looked like, in this condition. Friends and relatives who came to visit were shocked. But, we had the routine down pretty well, by this time.
One difficulty was the three times a day that she had to take all of her pills; usually more than a dozen each time. She almost always would get them into her mouth and then slump over, spilling them and the water out of her mouth. But she'd just pick them right back up and try again. Sometimes it took fifteen minutes, or more, for us to get them all swallowed.
Sadly, the day after her seizure, the Hospice nurse had come and told me that from her observations, she thought Denise would last no more than one to two weeks more. That day, Denise had still been "out of it", from the effects of the seizure. So that was the one time that she didn't hear what was said about her. The nurse gave me pamphlets describing the symptoms that would occur, with estimates of remaining survival time based on each group of possible symptoms. After the second neurologist visit, she got a new drug tha they thought might help with the mini-siezures. I remember when I brought them home, and someone was visiting, and she took the pills and asked if they would stop what was happening. I said I didn't know if, or when. And she said "Tommorrow?", somewhat insistently, fully expecting the drug to work.
You have to remember that she had been through SO MANY bad times, and had felt SO bad from different treatments and symptoms, and had ALWAYS come through them, and gotten better again. She saw this as just one more thing to overcome, and get through. (All along, she had insisted that she always wanted to know EVERYTHING about what was happening to her, and about what was GOING to happen. And I had agreed.) After that, I told her about the pamphlets that they had given me, and we read them together. And I told her what the nurse had said. She was shocked, and said, "You mean they don't expect me to come OUT of this?!". We talked about the lists of symptoms, and the fact that the end might be soon. She got very sad, finally, and just said, "But I'm not READY to go...!", as she began to cry. We held each other for a long time, sobbing.To be continued...