It is 1:00 am Friday morning. I am sitting in my recliner, alone in our family room. I just silenced the television and the room is very quiet. A few hours ago, Gail and I were in Lancaster with two of our daughters, enjoying dinner and a show at the Fulton Theater. Tomorrow morning, they will drive their own vehicles to Hershey and spend some of the day with their mother as the two-week cycle of misery starts all over again. It’s like the movie, “Groundhog Day,” except not so funny.
It's been a year and a month now since the bi-weekly administration of this concoction of drugs drips into my wife’s veins. I have always heard that the “cure is worse than the disease,” when referring to chemotherapy. In Gail’s case, this is not accurate since chemotherapy will not cure pancreatic cancer that has spread to other vital organs. But, for over a year, this treatment has held the cancer demon at bay, but it has created pathways for several other demons to wreak havoc on her precious body. Like all other long-term chemo patients, Gail’s frail body is succumbing to its’ devastation.
After eight to ten hours at the hospital, my wife will spend all weekend laying on the sofa, covered with an electric blanket, fighting off nausea and intestinal issues. When she lays beside me in bed, I will hear the quiet surge of the chemotherapy pump slowly adding to her misery until Sunday evening when the nurse will arrive to remove the connection to the port at the top of her chest. The port has become part of her anatomy. Her body is so thin that it protrudes like some kind of science fiction alien in her body.
Her legs will swell up to her hips, and the water retention no longer subsides over the following two weeks, like it did in the beginning. I will pull off her boots if she is on her feet for long because they become tight on her feet. The neuropathy has taken over her feet up to her knees, her arms to above her elbows, and her mouth. Touching anything is painful. She has no strength in her hands, so I open bottles and jars, and letters from her supporters. Her balance is off because she cannot feel the ground beneath her and her strength is sapped away because she cannot process nutrition well. That is the job of the pancreas and liver and they have rebelled against her for no apparent reason. Sometimes she awakens with red “splotches” on her face and extremely tired from being up several times during the night.
She is frustrated, not only because of the physical limitations, but also because her mind is not as sharp as her healthy self. She forgets some things and is sometimes slow to respond to issues that would normally require no thought. “Chemo-brain” she calls it. My wife is extremely intelligent and quick, so this impairment is especially difficult for her. It is also frustrating to me. It is all frustrating to me!
Wednesday was Valentine’s Day. I left work a little early and we had an early dinner at a favorite restaurant. As with any special event, there is a silent reel playing in the back of our minds saying, “This is likely the last time you will ever celebrate Valentine’s Day together.” We’ve learned not to stay there long because it’s too depressing. (Anyway, we thought last year would our last Valentine’s Day, but God had other plans, so we’re grateful!) We came home early and spent the evening together, mostly discussing our lives.
We have not talked about her illness in depth recently. I think we get tired of talking about all this. I also find myself not wanting to talk about the reality of her situation because I do not want to discourage her in any way. It’s already hard enough for her without me reminding her of all of these symptoms. But, we were reminded last night that talk we must. Acting as if something is not happening does not make it go away. And not communicating means not processing thoughts that must be processed if we are to maintain any resemblance of sanity. So, our Valentine’s evening was spent talking and crying and talking and crying . . .
I usually spend a few nights a week awake until late into the night - 2:30, 3:30, 4:30. I sit in the quiet and think a hundred thoughts. My mind does not want to shut down and of course I pay a price during the day after a few nights of sleeplessness. Funny thing though, all that thought does not change anything. But perhaps it does allow God to help me process my plight when all of the other distractions of life finally fade into the night air.
I’ve been hesitant to share in a blog recently because I don’t want to be negative all the time, and, as I said, I do not want to discourage Gail in any way. But last night we reminded each other that we just have to keep facing reality with as much truth, faith and hope as we’ve maintained throughout this journey. As a good friend reminded me today, our communication ability is a gift and we cannot shut off that faucet. Talking and crying is balm on an open wound. To the detriment of their relationship, some couples don’t talk much about what really matters. Others only talk at 110 decibels, drowning out the yearnings to be heard, understood and accepted. Those days are long past for Gail and I.
Well, it is 1:54 am. 6:00 will come quickly so I should try to sleep. I just want you to know that this does not get any easier. It is like Chinese torture, two weeks at a time, knowing that the end is worse than the torture.
But . . . God has not exited our lives. He continues to bring many people to encourage and strengthen us. He continues to use this tragedy to His glory. And my Savior’s words ring in my ears a dozen times a day. “In this world you will have many troubles, but take heart, I have overcome the world.” Most days I don’t feel like an overcomer right now. But reality is not dependent upon my feelings, and for that I am thankful.
So, 7:30am and the next two-week torture begins. But it will be a cold day in hell when Gail and I give in to the “troubles of this world.”
. . . . . . It’s now 10:27am Friday morning and “the troubles of the world” continue. Before infusion begins, there are numerous blood tests performed, in order to make certain she is healthy enough for the chemotherapy. She is not! Her platelets and red blood cells are far too low for infusion. This means that she is receiving blood today and then she will have to return for chemo next Friday. The new blood must have time to do its work. Chemotherapy destroys ones’ bone marrow where blood cells are made.
If she receives treatment next week, it will place her on a different two-week rotation. I know this may not sound like much but actually it further complicates our lives. We have lived for the last year in this rotation and our entire lives revolve around this schedule. We have three trips already planned, all of which are very important and are scheduled around meetings I/we need and want to attend. There’s also a little more vacation time where it’s warm. Airline tickets are already purchased. Hotel rooms are booked, and cars are rented. I am also coordinating a retreat with dates that cannot be changed. This means I will need to arrange for someone to stay with Gail since it will now be on her chemo weekend and I will not leave her alone during that time.
This is frustrating and discouraging for both of us. “In this world you will have troubles.” One of the most troubling issues in dealing with long-term, serious illness is the chaos it creates. Chaos is exhausting.
However, I am reminded of the words of a man who was much more familiar with troubles, pain, frustration and chaos – the Apostle Paul. Here’s how he handled it:
7 But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. 8 We are hard pressed on every side, but not crushed; perplexed, but not in despair; 9 persecuted, but not abandoned; struck down, but not destroyed. 10 We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. 11 For we who are alive are always being given over to death for Jesus’ sake, so that his life may also be revealed in our mortal body. 12 So then, death is at work in us, but life is at work in you.
16 Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 17 For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 18 So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal. (2 Corinthians 4:7-12 & 16-18)
Well, this situation sucks, but I will repeat. It will be a cold day in hell when Gail and I give in to the “troubles of this world.” Our Lord has overcome the world!