Good from bad: a temporary reprieve

Given that the early evening hours in a nursing home is the time when the staff is most hard pressed because all of the elderly patients must be collected and put to bed, it is no wonder that our son’s repeated calls to have someone attend to his nasogastric tube went unanswered. The thing had plugged up and was causing him to gag. It became unbearable, and he grew tired of waiting for them to come, so he just pulled it out himself. That was almost 4 days ago.

And he has been able to eat small meals, including a grilled cheese sandwich, but he is being very careful not to overload his stomach, and he hasn’t vomited.



Had the nursing home staff not screwed up, he would still be sitting there with the tube sucking nourishment out of his stomach as fast as it got put in because no one had a clue that he would be able to tolerate being without it.

He also no longer needs the oxygen -- his O-Sat is running in the 90s on room air. So for the time being, he is no longer tethered to plastic tubing. It may be that this is just a temporary reprieve, but we are thankful nonetheless, and so is he.

The morphine pump gives him a small dose every 20 minutes, and the amount has gradually been increased, so he has a tendency to “nod off” frequently, where he says he has funny little dreams.

 I love sitting there watching the expressions pass across his face.

Mother gets a little helper

With the ominous words of Jagger and company’s late 1960s song lurking, I pay an early afternoon visit to the rural clinic where “I am not a doctor, just call me Bob” takes care of me, to see if he can offer anything to help me calm down and sleep at night. I feel so guilty that God is not enough to get me through, but I am so wound up emotionally and I looked so awful from lack of sleep in the last pictures we took at the nursing home on Christmas that I decided...  

Steps Needed to be Taken

This man is not like Dr Kutz, the neurosurgeon who removed our son’s brain tumor and who arranged for $90,000 of radiation treatment that our son was never charged for.

Not a doctor Bob is not tall, and he does not, as our son noted so accurately about Dr Kutz, “light up the room” when he comes in.

He is not so handsome, like Dr Cavagnol, the surgeon who removed the axillary mass but could not complete the operation on Dec. 13, that I must look at his shoes in order to hear what he saying.

No indeed. One can look full into Not a Doctor Bob’s homely face, which is round and fat and looks a little like a toads, and be reminded of a comfortable couch or chair that you can nestle down in and relax with. He took my hand when he sat down and held it. He hugged me with both arms, when we stood up to leave. He gave me a 6-week sample of one drug and prescribed two others, as needed, to get me through the day and night. And he did not charge me for the visit.

I am aghast at the idea of taking these drugs – I feel guilty that I even need these drugs (after all, I have God, why do I need pharmaceuticals?), but even so, I definitely need something to help me sleep. Just take it as you need, he reassures me. It will get you over the hump.

Okey dokey, Just Call Me Bob, I’ll trust you…. As long as these keep me calm and together and I don’t start hallucinating and run into Alice...

I’ll be OK.

Sitting up and taking nourishment

I used to clean house for this delightful old man and there was a certain routine we fell into when I arrived at his house. I would say:

“And how are you today?”

And he would respond:

“As long as I can sit up and take nourishment, I guess I can’t complain too much.”

We are very grateful that N can still sit up and take nourishment, even though it isn’t very much and even though it gets sucked out of his stomach fairly quickly. He has a great deal that he could complain about.

Occasionally, the suction for the NG tube can be turned off for about a half hour or so while he is eating to give his stomach a chance to absorb a bit more of the nutrients, but inevitably the suction must be turned back on and then it all comes back out. Or not.

They are trying all sorts of things to see if he can chew it fine enough, and sometimes he can, and sometimes he can’t, and then the tube becomes clogged.

We have become quite adept at unclogging the tube if it clogs at the connector, but if it gets clogged in his stomach, or starts to pull out, then we have to get help, which is the main reason why we are not able to bring him home. It would take the hospice nurse about 45 minutes to get here.

On Saturday, we had a rather nicer Christmas dinner with friends – which was a blessing because we had totally forgotten about trying to make a Christmas dinner for ourselves – than he did, but it did us good to see him enjoy the taste of the food he was given...

and wearing a new hat his Uncle Andy got him. Unfortunately he is not able to wear a new shirt he he was given given because (1) the heat is cranked up very high in the nursing home and he overheats easily, and (2) even though his flesh is beginning to melt away, his belly has swollen so much because of the effects of the tumor that the t-shirt it is too tight and uncomfortable against his skin.


Nate developed a very special relationship with the crew that mans the local train that delivers empty cars and picks up full ones on Sundays at one of the local manufacturers, and I was going to make an effort yesterday to today to disconnect him from the suction pump, bundle him up, and take him for a ride to where they do the switching, but unfortunately, it was very cold and N said he was too weak to walk to where the train would be. If it warms up enough toward the end of the week, I will try again to wheel him out to the car and at least bring him home for a little while.

In the meantime, while he is still alert and oriented and not requiring so much morphine that he is out of it, we are trying to make the best of what time we have left.

Fudge

Last Christmas, Jim Beam and I got together and made some truly awesome chocolate-walnut fudge that I sent off to members of my family as part of the Christmas box and gave to various people here, including our friends Judy and Charlie, and we ate quite a bit of it ourselves.

This year I did not get around to making the fudge because other things forced their way to the top of the list of things to do. So, R went to the local tourist stop a mile or so down the highway and bought fudge from them. They sell a lot of it, and it is OK fudge, but definitely not as good as the homemade variety. Last Friday, he was at the hospital with our son trying to get everything coordinated with hospice and getting him discharged to the local nursing home, so I packed up the Christmas box, put a box of fudge in each family’s bag, called Judy and asked if they could P-U-L-E-E-Z-E help me by taking the package to UPS.

And bless them, they did. Charlie arrived and I gave him $50 and told him I thought it would be about $25. Silly me. It cost $35 to send two boxes to California. We are going to do something different next year, but that is another story.

I had several boxes of fudge left over. Apparently I was supposed to have given each family two boxes of fudge.

We had coffee with Judy and her husband earlier in the week and exchanged small gifts – she gave us a plate of homemade cookies and fudge she had made, and we gave them two doohickeys to keep ants out of hummingbird feeders and a box of the fudge.

When we got back home, we sampled some of her fudge and I sort of cringed with embarrassment because her fudge looked so much better than what we had bought and it certainly tasted a great deal better than the fudge we had given them. I had visions of her offering the box of fudge to someone else, who takes one look at it and passes it on again…. and again…. the perpetual gift of fudge…

Breath of Heaven...

Back on December 20, 2005 I posted some of the lyrics to the Amy Grant song, Breath of Heaven, because I was stressed out about something and was trying to rest in God's presence to get me through.

I suspect the problem had something to do with our son. He has had a very difficult time negotiating life.

The song is playing in my head a lot now, too. Since June we have been flirting with the edges of the Valley of the Shadow but now we are headed deep down down into it...

Breath of Heaven
Hold me together
Be forever near me
Breath of Heaven

Breath of Heaven
Lighten my darkness...

I feel a certain affinity for Mary these days. She was not expecting to get pregnant, and neither was I. We both brought forth sons into the world; her's of course had a somewhat more important role to fill on this earth than mine did, but I am just now finding out that he touched peoples' lives in ways I never suspected. She watched her son die at age 33. So are we.

I am just so thankful I have God's presence to walk with us through it.

I cook my tongue

My mother was a very creative cook in the kitchen. She fed 4 children and her husband very well with plain simple food cooked very well. Until she was about 10 years old, she lived on a small ranch near Elbert, Colorado, and she grew up eating beef, pork, and chicken that her father and brother butchered themselves. They used every part of the animal they killed that was edible. I don’t know how involved she was in helping her mother in the kitchen during those early years, but in the years after they left the farm and moved to Los Angele during the Depression, she was well trained at knowing how to get the most bang out of her buck. And she often came home from the store with very cheap cuts of less desirable meat and did amazing things. A big pot of pork hocks cooked with potatoes and sauerkraut was one of my favorite.

I remember the first time she opened a package of beef tongue and laid it out on the counter. I was stunned at how gross it looked, and thought, “no way am I eating that.” But after she had cooked it and gotten rid of the outer skin with all the bumps and had chopped the meat, it tasted wonderful.

So, I did not turn my nose up a month or so ago when I was offered a beef heart and a tongue. I had put it in the freezer and had sort of forgotten about it, but Richard reminded me that I needed to cook it so he could free up the space, so I did. I found a recipe and cooked it in the crock pot.

He came walking up to the counter as I was peeling off the outer skin.

“Are you going to eat your tongue for dinner?”

We looked at each other, and began to laugh. And we have had a few other amusing moments in the days since discussing the disposition of my tongue.

It looks like I will be eating the whole thing myself. Richard took one look at the organ laying there on the cutting board and offered the opinion that he wouldn’t eat it in a million years.

How about a small taste? It really is very good.

Does it have the texture of liver?

No. It is a muscle. It has the texture of any other muscle meat. Sure you don’t want any?

Absolutely not.

His loss.

My, what beautiful shoes you have…

It was just totally weird the sorts of things that flashed through my mind as I sat in the hospital room a few days ago and the surgeon who removed the mass in our boy’s armpit in July, and who was to have done the operation on Monday, came in to tell us the bad news.

News that was taking away the last little sliver of hope.

The man is so strikingly handsome, that it was too distracting to look at his face and try listen to what he was telling us at the same time. I stared at his feet instead. He was wearing beautiful brown leather shoes, glistening shoes, in perfect character with everything else about him.

And then shortly after he left the room, I went out to the hall and down corridor between the two wings of rooms on that floor, and I stood against the wall, sort of out of sight, and I cried. Much to my surprise, he was suddenly there, rubbing my back and expressing how sorry he was. I think he meant it. From what I can see of his Facebook page, he has two young boys. Perhaps he was imagining the unimaginable….

Rollin’ along…

Years ago I read a most gripping novel about a driver maneuvering his seriously powerful race car in a European race. I think he had nicknamed it the “Green Hornet." This race was not on an oval where they just go round and round and round and round hour after hour – but one of those races like Le Mans, where the course is over public roads, and in this case up into the mountains. The author described in wonderful detail the techniques the driver uses to coax his Ferrari or Porsche or whatever it is to take the curves he comes up on as fast as possible without leaving the road. I remember that much of it, but not the author’s name nor the name of the novel.

We now have six cars – six! (count 'em folks) – keeping in mind that up until 2 weeks ago there were 3 people driving. It’s hilarious in one way and pitiful in another, but there is a good explanation for all of this; in any event, we will begin shedding some of these cars fairly soon. We have been rolling down the highway in any of several of these cars that we trust enough to get us to the hospital. Every day this week, in fact, at least one of us has climbed into a vehicle and powered his or her way down the highway for 90 minutes to get to the hospital.

As one heads west from Willow Springs toward Springfield, the land flattens out quite a bit and the winding, up and down roads near the house began to level out and straighten, but even so, here and there are turns with warning signs to reduce speed – especially for the big rigs that have habit of turning over if they go too fast.

Yesterday as I was rolling along, I came to one of the two curves on the highway that one really does need to slow down a bit to be safe, and as I adjusted my speed and kept a steady hand on the wheel and keeping an eye on the car next to me, I imagined, just for a second, that I was that race car driver maneuvering my Porsche around a turn rather than a mother heading off in her 1998 Olds to spend some time with her terminally ill child.

Yesterday ended on a fairly good note considering that the end note is going to be very bad indeed. The chest tube that was continuing to pour out fluid has stopped draining. This is huge, because it means there is more of a chance that it can be taken out and he can be moved to a facility closer to home. His care while he is at the hospital has been transitioned to the palliative care doctor, who has added drugs and increased doses and has made our boy much more comfortable. Nate asked for a nasogastric tube yesterday, which is not very pleasant but is much better than the nearly constant vomiting of vile stuff from his stomach, and as the day progressed, it was much easier to be in the room with him.

So on the trip home last night as I climbed into my powerful race car and rolled on down the highway toward home, I was actually feeing at peace. And I managed to reach  two of the three intersections on the highway with stoplights when they were green.

"Gee", my husband said when I walked in, "you sure made good time!" Little did he know….

A change of plans...

If I were a psychiatrist trying to figure out what makes me tick, I might ask me why in the midst of the drama connected with our son and his deteriorating health, I am writing about garbage disposals falling out, mistakes I have made while preparing tapioca pudding, and pickling green tomatoes. There are several possibilities, but the fact is that life does go on. The sun comes up, we get out of bed and put one foot forward, and move through the day, and other things happen that we have to think about besides the problems with our son.

The general surgeon who removed the baseball size mass in our son’s armpit a few months ago appears to be a very good surgeon. This I was told today by a man who came to visit our boy. His brother is an anesthesiologist at the hospital and works with our surgeon regularly, and he is highly regarded.

Our guy may very well be a good surgeon, but I am rather angry at him at the moment because he will insist on adding his voice to the choir of other physicians who are taking care of our son as they sing their old favorite…

“There Is No Hope For Your Son….”

He did it again this morning, when he was discussing with us the reason why the operation that was supposed to begin at about 7:30 to remove the baseball in Nate’s abdomen was going be temporarily postponed, if not canceled outright.

You understand, he said, that this is palliative. All this will do is buy him some more time.
Of course, I want to scream at him. Of course I understand. But I don’t want to hear it.

I did not want the surgery to be postponed. Every day that the operation is delayed gives the mass in his abdomen one more day to grow and become harder to remove – if indeed it can be removed at all at this point.

Our son’s ability to breathe began to deteriorate the day after he saw the surgeon last week to schedule the operation. And this morning, the surgeon, with his impeccable logic, explained to our son that his lung function was so bad that if he was having trouble breathing now – his right lung was not moving any air at all – he certainly would have far more trouble after the operation and he might not even survive the operation.

So, instead of the operation, he was admitted to the floor and went for a CT scan to see if they could figure out a reason why all this fluid had collected in the pleural space between his lungs and the ribs, and a thoracic specialist stuck a needle in there and drained out more than a liter of fluid... and then they put in a chest tube…. and

And tomorrow will be a new day and I have no idea what is going to happen…. 
Except the sun is going to come up....
and I will get out of bed...
and put one foot forward….

I packed a peck of pickled…

Hats off to the frugal woman of yesteryear who, having found herself up to the armpits with green tomatoes that had no chance of ripening, experimented around and discovered that they could be turned into some pretty darn good pickles.

For the first time ever, our tomato plants this year not only survived the summer, but were loaded with beautiful tomatoes – albeit green -- right up until the first hard frost. I have never had to deal with green tomatoes before, but I found me a gallon jar, and some pickling spice, and the Internet was good enough to find me a recipe that did not require hot water bath processing, and so I put up a gallon of pickles.

And they rested in the refrigerator for the specified time. I opened it earlier in the week, and I am suitably impressed.

A spoonful of sugar…

The last step in making this recipe called Orange Tapioca Pudding that I have involves adding a pinch of salt to 2 egg whites, whipping until soft peaks form, and then adding 1 tablespoon of sugar.

This was taking place on Sunday. I had already made a stew out of a beef heart a friend gave me (thanks Donna for reminding me how good beef heart is).

And I had made a lovely loaf of Italian herb bread in my cast iron pot….

And now I was finishing up the dessert. I very cleverly (I thought) had put the tapioca in the small crock pot, which meant that in between periodic stirring, I could vacuum and mop the floor and clean the outside of the refrigerator and the cabinets and sweep down cobwebs and so on, rather than stand glued to the floor in front of the stove stirring constantly for a very long time.

I was doing all of this because I had taken the unusual and very impulsive action of inviting my friend Judy for lunch on Monday. I am not very comfortable inviting people for a meal. I am embarrassed about my house, and I worry that the food I make is not going turn out, and on top of that, I do not seem to have that “gift of hospitality” that my mother and sister have been gifted with. But I love Judy and I needed to talk to her about stuff.  

After the egg white were nicely foaming, I added the tablespoon of sugar and finished beating them and folded them in to my lovely orange tapioca pudding. And then I thought I had better taste it.

Have mercy!

I had dumped in a tablespoon of salt instead of sugar.

Richard heard my cry of dismay and came in the kitchen. “Throw it away,” he said.

I could not bear to dump all of that tapioca down the drain, so I put it in sieve and washed the “pudding” part away, leaving the orange slices and the clear balls of tapioca, and then I found a box of instant vanilla pudding and prepared that and mixed it all together.

It was not quite as good as the original would have been, but it worked.

And I had a lovely visit with my friend.

Coffee can is lookin' pretty good

We have an account at one of the Big Banks in the town down the road because we had a customer in Germany who paid us with wire transfers and it was the only bank in the area, at that time,  that was set up to accept international electronic wire transfers.

This morning I was entering the accounting into the computer and I see that....

In July the account earned 13 cents in interest. Wow!

In August the account earned 13 cents in interest. Double wow!!

In September the account earned 11 cents in interest. What the....?

I go roaring into R's office:

Shouldn't we have earned a bit MORE interest in September seeing as the account now has 26 more cents in it? How come we only got 11 cents?

All he could think of was that they must have cut the amount of interest they are paying.

I have never been particularly fond of this bank. When I was in college, I got so riled up about this bank and its policies (this was during the Vietnam war, doncha know) that I joined other students in a protest at one of its local branches.

In the meantime, I am thinking that there is absolutely no advantage to having our money in this bank. We would be just as well off putting it in a coffee can and burying it in the yard.

I can say “No!”

When I was in high school, I was a member of the choir, and every year we put on several productions – a Christmas concert and a Spring concert, which was usually excerpts from musicals that were popular then.

One year the Spring production included segments from Oklahoma! and the choir director insisted that I try out for the part of Ado Annie Carnes, who sings the song that begins

I'm just a girl who cain't say no,
I'm in a terrible fix...

I was just stunned that she thought I was a good enough singer to try out for the part. I had a decent alto voice back then, and the part was low enough for me to manage, but even so, I knew I probably had a snowball’s chance in a hot place of ever getting the part. Just the fact that she asked me shocked me so much that I said “yes” and tried out.

A much better singer than I also auditioned and I did not get the part.

But that was OK. Just being thought “good enough” to try out did my quivering self-esteem a world of good.

In any event, I have found over the years that I have been in a similar circumstances as poor Ado Annie – I am almost never able say “No” when people ask me to do things.

My motives for saying “Yes” have not always been admirable. I suspect I am something of a “people pleaser:”

• I want to be thought of as being a cooperative and helpful
• I want people to like me
• I want to impress them

 Sometimes, of course, I actually do want to do what I have been asked to do and I am very happy to say “Yes” because I genuinely want to do it.

I was very tired late yesterday afternoon – we had gone to Town to pay our property tax bill at the Courthouse, pick up a garbage disposer, and to do some shopping at 5 or 6 other places (WalMart is really exhausting). When we returned, Nate was trying to coordinate an appointment with his oncologist and a consult with the surgeon for next week on the same day so we could avoid making 2 trips within a few days (which did not work out—the surgeon is in surgery on the day the appointment was scheduled with the oncologist; and the oncologist is at another facility on the day when the surgeon could see him), so I was somewhat stressed about that on top of being tired, and then I was further preoccupied by a manuscript that had arrived that morning by an author group from Taiwan who had put together some very strange sentences.

In midst of this, I received a telephone call from our pastor wanting to know if I could come to the church tonight at 7:30 and play 3 Christmas songs (hard ones!) on the electronic keyboard (which has a recording function) so the people from church who are going to ride on the Christmas float in the upcoming Christmas parade down main street will have accompaniment.

I almost had a meltdown right there on the phone. Without even thinking too much about this, I was very surprised to hear myself say “No, I am sorry, I cannot do it.”

We talked a bit longer and then I sat there staring at the phone in stunned disbelief.

I had actually said “No!”

Today of course I am feeling a bit guilty for putting them in a bind, but I am also feeling very relieved that tonight at 7:30, I will not be heading out the door to play (very badly indeed) 3 Christmas songs on the electronic keyboard.