End Game

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?

Creatinine Blues

Monday’s can be hard. I dropped C off at the clinic and then headed for downtown Minneapolis to try to plead mercy on a parking ticket I got while we were semi-conscious at the clinic on Saturday. I parked OK, a legal spot, a four-hour pass on a meter with C’s handicap permit, but they tagged me for not showing a front license plate. A hundred and four smackers. And for what? I paid the license fee. I have a plate on the back. I guess its so meter maids don’t have to walk the extra distance to read the numbers.

Anyway, I went down to the hall of injustice to plead my case and something magical happened. I got a nice magistrate who said, “Look, you put a front plate on the car, take a picture, bring it in within one week, and we’ll drop the ticket.” “OK” says I, and I grab my stuff and skee-daddle. I was all pumped up and proud of myself when I walked into the clinic and found C and our favorite PA in very somber conversation.

C’s kidneys are failing. The marker we watch that tells of their condition took a huge jump up in the last day. The medical staff wanted her in the hospital immediately. We bargained them into letting us go home, say good-bye to the kids, pack a bag and return for admission.

This has been a real up and down day. The last place C wanted to be was back in the dreaded hospital. Her last visit in January left a real bad taste in her mouth. She refuses to go back the transplant ward because of the treatment she received at that time.

So, she is on another ward, and facing more tests. There are several opinions floating around about what is going on with her. Each physician we talk to has one. Hopefully, with more empirical data the differing theories will coalesce into something that appears more unified.

Tonight, she will have more blood drawn, will receive blood, will get another chest x-ray, will get a CT scan of her sinuses, will have samples taken of anything coming out of her, and will no doubt have to give her life’s medical history to at least three more people who don’t bother to look it up in her record (or maybe they do it to see if you were fibbing them the first fifteen times).

I am home with J. K is babysitting and will return late. What a deal. Send good thoughts C’s way as she battles through this latest onslaught.

P.

More Emor

I know way more than I want to about emergency rooms at 3 in the morning. We were there, again, early Saturday AM.

Friday was supposed to be a reunion of sorts with old friends who were in town and wanted to go out to a local restaurant for dinner. I went home for lunch, taking a break from my consulting gig, and all was well. We talked about how nice it was going to be to see these friends. Plus, one of C’s best friends was also driving down from Duluth to spend the weekend and cover for me as I did the reverse trip north to see my parents.

All of that went out the window as I came home after a long day to find C in the bedroom, sick. She had been reacquainting herself with the inside of the commode in a far too intimate fashion for the previous couple of hours. Our poor girl was in no shape to go out for dinner. Since the reservations were made and the friends on the way, K, J, and I went, leaving Sophie the Wonder Dawg on medical duty, watching over our barfy mother and spouse.

I would like to say that the dinner was great and the time wonderful (and of course it was), but it also wasn’t because there was a hole at the table. Upon returning home and bidding our guests adieu, I found that C had invited a fever to come and join the party and after making a phone consultation, we headed down to the University Hospital’s Emergency room about midnight.

We spent the next several hours going over old ground, giving blood, taking cultures, getting X-rays, and generally feeling pretty lousy. To give you an idea of how tired I was, I laid down on the floor of the emergency room stall where we were housed because I could not stay upright in the oh-so-hard visitor’s chair the hospital reluctantly provides for the next of kin. That lasted for an unknown period of time (my consciousness was briefly on vacation), but then the mortuary slab-like temperature of the floor eventually seeped into my bones and I begrudgingly reoccupied the chair.

We eventually were given a pass to go home as they couldn’t find anything glaringly wrong with C. By then it was 3 AM and we sleepily wove our way home where we passed a mostly sleepless period consisting of tossing, turning, and moaning. The fever came back in spades, peaking at 103 something just before dawn. We went through a period of half-consciousness before heading back down to the clinic – a requirement in return for not being admitted to the hospital the night before.

There, we did the same as in the emor hours before. Bloodwork, cultures, pokes and prods – listening to the sounds of internal bodily functions. Turns out that the radiologist says C has pneumonia, so there were additional antibiotics. We were wrecks and looked every inch of it. You know that things are bad when the staff of the cancer clinics stand over you with pursed lips and sorrowful expressions – and that was for me.

We went in again today (as we will for the next five days) to keep an eye on what’s going on with this infection, but today, we were better. The fever is still there on and off, but we got some sleep last night. We hope that this means that C is turning the corner. We will keep you informed.

Oh, BTW, I didn’t go to Duluth (sorry Mom and Dad). C’s best friend and Sister-in-Law did come down. We made the best of it.

TTFN, P.

Chemo and Shit

It’s been a week since my last confession.

I thought about updating last Wednesday, but I was too wiped. It was when I did my last session of chemo for this go around. Even though this kind of chemo (mono-clonal antibodies) is a walk in the park compared to standard chemo’s, it still leaves me limp at the end of the day. By the next morning, I am fine.

I don’t know if anyone out there knows what mono-clonal antibody therapy is – or wants to know for that matter. I can sketch it out, but I think I will wait to see if someone drops a line asking for that.

Anyway, I’m done for now. I’ll do another CT-scan in a couple of months to see if it did the trick. This is my third time around for this kind of treatment in the last six years. The previous two times produced excellent responses that gave me approximately three years of disease free living. We’ll see about this time.

I wish I could say the same about C. We are pretty much at the end of the line treatment wise there. Our last visit to her oncologist was kind of frustrating because the treatment options are so limited and her kidney function is so low that we are not sure what to try now. I walked out of the session feeling pretty frustrated. For now, we will wait a week and then decide if we can risk another go round with melphalon, the chemo drug she is trying now.

If her kidneys deteriorate any further, then we are looking at dialysis and that is something that no one wants.

The decisions we make now are starting to balance “quality of life” over “length of life” considerations. I hate this.

P.