Well, we finally have the bitter cold that we Minnesotans are perversely proud of and it immediately makes the brain turn to thoughts of warmer weather. That is mirrored in the advertisements I saw as I slowly read the morning paper over a cup of hot coffee in our kitchen this morning. The only sounds I heard were the pops and cracks of a house subjected to below zero temps, and the clanging and banging of a seriously lovesick and territorial male Cardinal as he repeatedly attacked his own image in the highly reflective aluminum chimney stack of our kitchen “kiva” fireplace.
My thoughts have been turning to cycles also of late. Seasonal cycles of dormancy, new life, growth, death, the stuff that carries on around us all the time if we only take the opportunity to look. I have been thinking a lot about life cycles and wondering how I can possibly explain to our children what we will all experience sometime soon. How can I explain it to myself?
You see, we are entering what is likely to be the last phase of the journey that begat this journal. C came home from the hospital on Thursday night because there was nothing that the medical system there could offer her that she could not get at home. We have pulled all of the available rabbits out of the hat. We have turned our pockets inside out and peered at the lint in hopes that we may have overlooked a miracle there somewhere that would take this bad dream away and give us back our life as it was before C’s cancer came knocking.
C’s kidneys are failing. Multiple myeloma can make your life miserable in several different ways – some are direct and some blindside you with a sucker punch as you walk past a dark alley. Kidney failure is one of those. The myeloma disease causes the body to produce way more of a special type of protein than is normally found in a healthy person. These proteins float around in the bloodstream until they reach the kidneys which function like a strainer; filtering out the bad stuff and letting the good stuff through. But like we all know, a strainer only works if stuff gets through. Just so with the kidneys. When they are healthy, we take them for granted, like the handy household toilet – there when we want it, but not something we obsess over. But if it plugs up, it quickly gets our attention.
C wound up in the hospital this last time because her kidneys are plugged up with all of the extra protein and detritus of her disease. Unfortunately, there is no roto-router for the human kidney. It either fixes itself over time or it does not.
There are things that can be done for folks with buggered plumbing. If you have a certain kind of protein floating around in your system, there is a technique called plasmapheresis where you are hooked up to a machine that takes your blood, separates the plasma portion, dumps your plasma, replaces it with “good” plasma, recombines everything and puts it back into you. This was talked about, but further testing showed that C did not have much of this “plasma-based” protein in her system, so the treatment would likely have little positive effect.
The more common treatment for kidney failure is dialysis. This is similar to plasmapheresis in that your blood is routed out of the body, but it goes into a dialysis machine that functions like an artificial kidney. For someone undergoing dialysis, they first must have a dialysis catheter surgically implanted that is basically an in/out port that allows connection to the machine. Then the patient gets hooked up three or so times a week for six hours at a time to allow the artificial kidney to filter their blood of toxins. To say this interferes with your social life would be an understatement.
For many reasons, dialysis is seen as a stop gap treatment rather than a long-term solution to a problem. It is used to allow a persons own kidneys to heal over time or to keep a patient alive until they can undergo a kidney transplant.
Because of C’s condition, the physicians we saw in the hospital, both the oncologist and the nephrologist (kidney specialist) agreed that they would not recommend dialysis for C. Because C is unable to produce sufficient platelets (the blood component that helps in the clotting function) on her own, she is prone to bleeding at the drop of a hat and must get infusions of platelets roughly twice a week. Any type of surgical procedure would be unduly risky under these conditions.
Her damaged immune system is also a factor in this decision. Anytime there is a break in the skin, it is an opportunity for infection to enter. When this break is to allow a tube to enter and connect with the blood stream, it is a more potent source of danger. C already has one such catheter and a dialysis shunt would be a second, and theoretically more dangerous one.
Third, there was the unspoken, but real recognition that this would be only a delaying action and one that would involve strain and pain to someone who has already seen a great deal of that. Enough is enough.
We have done all of the known and accepted treatments for multiple myeloma. We have talked it over and we both agree that there is little to gain from doing anything that will cause C pain, stress, or require her to be away from home.
We don’t know how this will play out. We don’t have a sense of time. It could be days, weeks, or months. We never know how she will feel when she greets a new day. We just take it one day at a time – doing what we must to make that day as good as possible.
C found out that her GVH has returned. While in the hospital this last time, she had a skin biopsy done to diagnose a persistent skin rash that had been bugging her. This might explain some of the gastro-intestinal issues that have been making things difficult. It also might explain her loss of appetite.
So, we now find ourselves thinking of cycles. How does one enter the final one in one’s life? How does one conduct oneself at this time? How can we comfort our children when we ourselves feel like we are walking blindly? We know that there are resources out there that can help us through this and we are investigating them, but right now, it feels like we are on a strange planet that looks and feels like our old one, but is subtly different. The light has a strange cast to it, and the sounds all are shifted just slightly in timbre. It is the same, but not the same.
How do we do this?