Tuesday, October 31, 2006

The End of Week #5

All the personnel at the clinic were in full costume this morning, and me without my camera. This crew is just terrific; they are always cheerful, kind, encouraging. I don't know how they keep their spirits up when everyone they see is sick and their job is basically to make them feel worse.

Today marks the end of the fifth week of treatment. When Jim started this I thought that seemed like a painfully long time, but here we are. The next two weeks are going to be the really nasty ones during which all sorts of things are going to go wrong, quit working, be manifested. I had a long discussion with the oncological nutritionist this morning. She warned me that this is the beginning of a rapid downward spiral; weight loss, trouble keeping even liquids down, more severe fatigue, increased pain, plus other side effects that are even less pleasant. But she was also heartened by his seeming "good health" at this point in the game. He has lost 13 pounds so far; she said patients lose between 20 and 50 pounds! His caloric intake has been upped to 2500 per day ( from 2100) to stave off any further weight loss, or at least minimize it. And she encourages using other liquids for nourishment, poured right through the feeding tube; Gatorade, chocolate milk, milk shakes (what's the point if you can't taste them!!), just to add calories. So when we got home he tanked up on a Gatorade. Yum.

On the bright side she said that after about three months he should begin getting back his appetite and may be able to start on soft foods. Once that happens and he gains a bit of weight he will have the feeding tube removed and will be (almost) good as new! Most importantly, YES! He will be able to travel and we can probably head down to the beach by mid-February. That was a big spirit booster.

This being Halloween I received a photo of my grand niece, Ruby, in her Duck suit. Here she is in all her feathered glory!

Our neighborhood has been very quite for the last few years with very few little (or big) candy beggars ringing the bell. This year I am completely unprepared so there will probably be a mob. I think I'll just hunker down and sit in front of the fire and count our blessings. Even with all this terribleness going on, it could be much, much worse. And it's almost over. Jim has already retired for the evening, saying that he was very, very tired. And it's only 6:30 PM. I think I have just had a foretaste of the weeks to come.

By the way, while in the clinic today another woman asked me where I got my Bulls Eye shoes. Check them out!

Monday, October 30, 2006

Pretty Good, Thanks

See? I told you you would recognize him anywhere! He was out in the garden doing what? Sweeping leaves, of course. Aside from being cold -- his thermostat has been fried -- he is quite peppy.

After a 48-hour break he feels much better. But here we are at Monday again so it's back to the hospital for five more days of radiation. He just begins to have a shadow of taste -- the chamomile tea was almost palatable this morning and oatmeal almost seemed edible -- and they're after him again.

Jim now has a dozen treatments remaining; 11 radiations, one chemo. It is amazing to me that it was only 6 weeks ago that he received this terrible diagnosis, and now he is almost done with his treatment.

Dinner tonight was delicious for me and something out of a can through a feeding tube for him. But what was delicious for both of us was looking at some photos sent to us by our Canadian friends who also have a house in Cuyutlán. They stayed in our house in 2004-05 while their house was being built. Looking at these picture spurred Jim on to full recovery so we can get there this year. I don't have copies of their pictures (I'll try to figure out out to scan them) but I do have a lovely Cuyutlán sunset to show you.

This photo was taken from the third floor terrace of our house, in about January or February of last year.

Here is another picture from the weekly open market in Armeria, the next village over. This is the "chicken man" who always has a long line of patrons at his stall. He will sell you any and all parts of a chicken, depending on your menu. He is unfailingly cheerful and charming, and gets a particular kick of any gringa who takes an interest in his product. He wields his cleaver like a conductor.

That's it for today. We have had a lovely walk in the cold, crisp night air. Tomorrow is the last day of Week #5. I have to get some info from the nutritionist about how many calories Jim should be "eating." He weighed in with a five pound loss this morning and this is not good. I say 2000 calories; perhaps 2500 is better. He has been maintaining his weight pretty well until now but this morning he showed a loss of weight over the weekend.

Two more weeks and he's done. Hooray!0

Sunday, October 29, 2006

A Splendid Sunday

This treatment can do strange things, or rather behave in a strange manner. There are times when Jim is so sick he can hardly hold his head up. But today was a particularly excellent day for the patient. Still cannot speak or eat, but can swallow water and meds. Good night's sleep, productive garden day (yes, more leaves) and then "dress up" for a movie. We got there but the paper had published the wrong time. So instead of enjoying "Little Miss Sunshine" we segued over to the local Borders to browse books and look for a new recording of "The Cosi Fan Tutti", the only volume in our 45 vol. set that is missing. We found a pretty good one (not as good as the Phillips!). It is now just finishing and Jim is enjoying it, although he says that the sound is distorted. As we were getting ready to go to the movies he commented that he had not shaved for over a week and he has almost no beard left. This is about the only positive thing to say about this treatment! The skin on his lower jaw and neck is now very dark. Not the golden color he usually turns (he has 0much more than his share of melanin; he tans virtually overnight!), but more of a mahogany color, or even a bit purplish. But this will fade in time for him to get a Mexican tan. No, actually, he will not be able to go into the sun as of old. He will have to wear long sleeves or stay out of the sun. Pool time will be either early morning or after about 5 PM. This will ruin cocktail hour!

We have had a brisk walk around the neighborhood. It is getting cooler, at last. The sky is very clear, the sliver of moon is very bright. A beautiful night. Tomorrow we go back again for more of the same. But every day we go means I can check one off the 7-week calendar. There are a total of 13 more treatments; 12 at radiology, one at chemo. Keep November 14 in mind; that's the end.

Saturday, October 28, 2006

The Saturday Scene

The first of two blessedly treatment-free days passed without much excitement. The big treat was going up to the Davis Farmers' Market to buy corn on the cob, still sweet and delicious. Then I couldn't resist some Japanese eggplant for grilling or some vine-ripened tomatoes. I held off on the raspberries; I don't know why but I did. Perhaps next week. And I bought some of the local apple grower's apple juice. A wonderful treat.

Jim did get out and do a bit of gardening. Or better said, quite a bit of garden cleaning. These are two of the four leaf piles he built.
As I said earlier, the winds at the beginning of the week virtually stripped the trees in our yard and in our neighbor's yard. His leaves ended up in our garden. Almost as soon as Jim raked and swept another shower of leaves fell from the Pistache trees. There won't be an end to it until there is a cold snap and all the leaves drop at once.

For my part, I cold-packed the mince meat we made last year. It has been perking in the closet since then. It was now ready to put in jars and seal for future use. This recipe is one from Merle Ellis, a fellow who used to have a "cooking" show on KQED years ago, dedicated to meat issues, he being a butcher. This is called Merle's Mom's Mincemeat, and it is the BEST recipe ever. The problem is finding suet. If you go to a meat section of a supermarket and ask for suet, they look at you strangely and tell you that all their meat comes pre-packed and suet is NOT something that is in any of the packages. We finally located a butcher shop in Roseville (25 miles away) that can get you suet if you give them a three or four week advance notice. This stuff is the worst kind of fat you can possible eat (along with lard) but you simply can't make real mincemeat without it!

It is quite strange to sit down to dinner with Jim across the table but not eating. I had better get used to it. He will probably not be able to eat again for several weeks. Nothing even appeals to him anymore. He will begin digging into (tapping into?) the cases of liquid supplement the hospital sent. The doc said that in a couple of months, more or less, he may feel like eating solid food again. Meanwhile, I get to eat everything I especially love and he does not: lots of fish (to hell with the mercury levels), piles of veggies. A quasi-vegetarian diet.

The evening air is again a bit nippy. But we had a nice stroll through the neighborhood. People's houses are decorated for the Halloween festivities; carved pumpkins, spooky cobwebs, strands of lights. This is definitely not my favorite holiday time. i have never been able to get into the mood. Not this year, either.

Don't forget to "fall behind" and reset your clocks.

Friday, October 27, 2006

Purple Spots

I have a friend who has been known to break out in purple blotches in times of stress. God knows Jim is having severe stress, but that's not what is causing this latest manifestation. These spots are the result of his chemo. They are like dime-sized bruises, although more livid than a run-of-the-mill bump. He has one on his hand, one on his cheek, one on his neck. He was assured they would fade once his blood counts (red and white) get back up to normal. Those numbers, along with his hemoglobin and hematocrit are all quite a bit below normal. Other numbers, however, are doing fine and, I guess, are not as severely affected. His creatinine (kidney function) is holding on. A miracle, given the poisons they have to filter out. This number has not changed at all, from before the onset of treatment until now. What can I say? The guy's got killer kidneys.

After I wrote about the joys of listening to Mozart it appears that Jim is now losing his hearing. Not exactly losing it, but how he hears things has changed. Music is sharp and tinny. All sounds have a different timbre to them. So now, not only can he not speak -- his voice is completely gone -- but he can't hear. In an election year, for this man this is not good news. Both of these conditions will eventually resolve. Just wait. There's another election in 2008!

It appears that tonight was the last "table for two" dinner we will have for awhile. Jim can no longer eat or swallow food. He can still get water and meds down, but nothing else. From now on it will be liquid calories through the feeding tube to the tune of about 2000 calories per day to maintain his weight. Even with Vicodin it is too painful. What he had requested for dinner was some salmon, some macaroni and cheese and some broccoli. Anybody want some leftover macaroni? I can always make salmon cakes, and I love cold broccoli, but mac and cheese and I just don't get close. So for awhile it will be "table for one." I will miss my dining partner and the snappy repartée at the table. I predict it will all be business as usual by Christmas!

We have had a lovely walk around the neighborhood. The weather is cool and crisp; the kind that puts roses in your cheeks. Now two days of relief from the assault of radiation, two days to recover and rest. For both of us.

The Cardinals have won the World Series. And the crowd went wild. Put that one to bed for another year.

Thursday, October 26, 2006

Mozart as Medicine Man

Some years back Jim bought the complete works of Mozart, a Phillips boxed set of 45 volumes, some 150 disks. This is a whopping big helping of that gentleman's tunes. During these past weeks we have been playing through the collection and finding this piercingly beautiful music quite therapeutic. We have heard five operas, the divertimenti, the serenades and symphonies, and an astonishing number of piano concerti. That guy could really write! Disks are played going and coming for treatment and while we are at home. I don't think we will have gotten through the entire collection by the time treatment is finished; 13 more radiations, one more chemo. We will then play them to restore Jim's health and vigor. Some say, "Before I die I want to read all of James Joyce." (why??) Or "Visit all the National Parks." Or "Go to all the fabulous libraries in the world." I guess for Jim it's "Hear all of Mozart." Fortunately there are still years of Mozart left.

It was a quiet afternoon, napping mainly. He does feel just a tad better as he continues to recover from last week's chemo. It takes about five or six days to feel better after such a severe chemical attack. On Tuesday we had some strong winds that managed to strip all the trees of every remaining leaf that was hanging on in hopes of turning red. So now they are piled up on the front steps, on the driveway, on the front terrace, on the back terrace, and in the pool. Jim went outside, took a look and came back in. So tomorrow I will go out and sweep them up. In truth, I can use the exercise and diversion. The weather is still lovely; crisp in the morning turning to warm in the afternoons. A bit of raking and sweeping will be good for me.

The doc re-upped the pain meds today. Next week he will probably get something stronger, a little morphine concoction. If he takes some Vicodin before meals he is able to get food down as the swallowing is easier. Otherwise he is relying more and more on the liquid supplements. But he managed to get down some grilled pork tenderloin, mashed potatoes and steamed broccoli. I offered some luscious Jello for dessert. He declined. Can't imagine.

I am grateful for Fridays. Not only do I get one of my twice-weekly massages but after treatment he has two days off to rest and recover. Sleep and solitude are what he craves. By Monday he is somewhat refreshed. Me, too.

Wednesday, October 25, 2006

Welcome to Week #5

We were told that nasty things start happening in Week #5. They weren't kidding. Almost overnight Jim has gotten very sick. When he got up this morning he was very lethargic, could not speak, could not eat, could hardly drink. By the time we got to the hosptial he was almost alseep on his feet, even though he had a pretty good night. This can be put on the back of the Vicodin. He is also dealing with its severe side effects. Enough said. This was his day to see Dr. Schmidt and as we sat in the examining room Jim lay down on the table and fell asleep. The doc is still very pleased with his progress and is sympathtic to the medically-induced side effects. They have all sorts of things to give him to relieve the suffering they are causing. The tumor is shrinking and the inside of his mouth still looks very healthy. So it wasn't all bad. Just most of it. Jim dozed on the way home and went right to bed and slept for about an hour and a half. He woke feeling a bit better but still not hungry. What's so worrisome is that he has no energy at all. He can barely move from bed to chair to sofa. This is a big change which the doc says is only going to get more pronounced. His advide: sleep as much as you can. This sleeping activity, however, is counter to Jim's nature!

Yesterday I told you about the sage harvest. Here's what we got for our trouble.
The house is redolent with a fall herby-Thanksgiving turkey dressing-rich pork stew scent. It is even somewhat appealing to Jim, although he does not want to eat anything that even remotely resembles turkey or pork stew. He's lucky if he can get his meds down with plain water. He did a grand job of getting down some dinner; still swallowing, even though there is almost no taste involved. We have had our evening walk, slow but steady. I am very grateful he can still do that. it is good for him to get a bit of exercise. Good for me, too.

Now begins the really hard part, the "in sickness and in health" part. One makes this vow in the pink and never thinks of it again. We have come face to face with it and this is a test of what you said you would do, the contract you made. In one sense it is very easy; this is my beloved for whom I will do everything. In another it is agonizingly difficult. The assault on the body and the spirit is impossible to observe without raging against the fates that have brought it to us.

Now is "sickness"; soon will be "health".

Tuesday, October 24, 2006

The End of Week #4

Today marks the end of the fourth week of treatment. From now on it's going to be mainly downhill or, as the doctor says, the beginning of the "really bad part." How cheering! But at least that gives us some idea of what's in store. The radiology folk have all said that Jim has done very well up until now; still eating, not (too) nauseated, no great weight loss. The accumulated radiation will begin to wear on him and he will become much more fatigued. He did take a short nap today and work feeling better. He is now popping Vicodin frequently but pain still registers at about a 6 on a 1-10 scale. So tomorrow the doc will probably prescribe some stronger pain medication. Also tomorrow begins a new appointment time, a bit earlier in the morning. It takes him about two hours to get ready to go, or at least to feel ready to greet his public! I have the driving duty. I wait in the parking lot while he is getting treated, doing my needlework -- a Bargello pillow to commemorate this experience in our lives -- and listening to a book on tape, currently Salman Rushdie's "The Satanic Verses." Hilariously funny, enhanced by the reader who has a wonderful voice and a real flair for accents. Next project is a book by the Egyptian Nobelist Nagib Mafouz.

While Jim was getting chemo last week I went shopping. Well, how else should I spend 3 hours?. I saw a pair of shoes that made me laugh out loud. Nothing would do but I must have them to wear to cheer me up. Here they are!
In fact when I was in the waiting room this morning another "waiter" commented that they were certainly "cheerful" shoes. That made even Jim smile, and believe me, it's hard for him to smile at anything these days.

Yesterday afternoon I cut back the bushy sage plant on the side of the house. I carefully preserved all the leaves to harvest and dry. That is Jim's job this afternoon. He is plucking all the leaves off and spreading them on newspapers to dry. In a few days we will package them up in zip lock bags and stow them away for use throughout the winter. Some we will crush, some leave whole. Of course, I'm the only one who can taste them. Oh well. . .

It's getting cooler every day. The dog across the street is beginning to get his winter coat. Likewise Fonzie, a Wheaton Terrier down the road is looking bushier. The Chinese Pistache trees are turning a brilliant orange -- this is what passes for "fall color" in Davis. On my walk this morning I saw a whole yard full of pumpkins, store-bought but colorful nonetheless. School kids are riding off bundled up, even though it gets up to the low 80's during the day. Even students waiting at the bus stops have changed their cut-off shorts and tank tops for long jeans and down vests. Of course, that's over tank tops.

The patient ate a good dinner; shrimp, pasta, veggies. He has had his evening walk around the neighborhood, taken his pills and is ready for bed. Gosh, I can't believe this is Jim I'm talking about.

The Monday Scene

Every day brings some sort of change. This morning Jim discovered that his hearing is being affected by the radiation. No wonder! They are bombarding his head, just under his ear, with who knows how many RADS, at least enough to kill a thriving virus and zap his taste buds to smithereens. Sounds are tinny, sharp and distorted. That's one we weren't told about. Along with that, his throat is now so sore he can barely swallow and is taking most of his nutrition through the feeding tube. The week is not starting out on a very high note. But he is always more symptomatic in the morning; these things ebb a bit during the day, then return at bedtime.

This afternoon there arrived on the doorstep a wonderful gift from friends in Myrtle Creek, Oregon who have property in Cuyutlán. They are part of our "other" life. This is what they sent: a candle onto which Deborah had taped a picture of the Virgin of Guadalupe titled "Virgin of Cuytulán". Little did she know that every evening I light enough candles that the place looks like bloody Notre Dame. But this candle is a typical Mexican style that burns 24/7 to catch the attention of any passing saint who will answer prayers. On the bottom of the candle is says, "Prayers for a speedy recovery Jim." Yes indeed.

Things are getting more difficult, as we had been told they would. Jim has almost completely lost his voice, although the salt/soda/water gargle does help a bit. The really hard part is about to start. At the outset the doc said that serious side effects would start during the fourth week. That's where he is. His hair is falling out, he can't talk, he can't swallow, and he has begun to rely on Vicodin to make life tolerable. They have a delightful little morphine cocktail when the time comes. Fortunately he has lost only about 8 lbs. so far, and this is not a bad deal. He has shed his Mexican beer belly and really looks quite svelte.

He managed to have a pretty good dinner: sautéed Snapper, steamed carrots, boiled turnips (his favorite). Then a short walk around the neighborhood. Not too bad.

Here he is at the wedding of his niece, Erin, in Columbus, Ohio at the end of August. Aside from looking sort of beat up and haggard, you'd know him anywhere. Tomorrow marks the end of Week Four and the Beginning of Week Five. Stay tuned.

The Leaf Raker

This day marks the period of 48 - 72 hours without any treatment, or as you might call it, the weekend. I am always grateful for this lull in activity. It gives Jim a chance to "recover" a bit and to give his assaulted body a rest.

Eating is getting more and more difficult for him. Nothing tastes good and his throat is very sore. Last night we had Chinese take-out (at his request). He got down a bit of tofu, some green beans, some rice, but not much Mongonial beef. There are three food groups he can't eat; red meat, any citrus or anything with tomatoes. Too acidic. I, on the other hand, wolfed down some of everything, tossed back a couple of glasses of wine, and sighen with contentment. He ate very little, took pills and was not happy. But this, too, will pass. After dinner we took our usual short walk. The evening was mild and lovely, but he was bundled up with various jackets and warm shirts as he is always cold now.

Sunday was a sunny and warm day. Jim actually went out and raked and swept leaves and watered. This sort of activity is very good for him and is a good indication that at least he is feeling well enough to do it. I cleared out flower beds in preparation for bulbs. This will be the first Spring we will be in residence for about five years. A housesitter usually enjoys the iris, daffodils and wisteria of our garden. Perhaps we will be so lucky this year.

Everyone told us when we went to the "how to be a chemo patient" class that fatigue, not nausea, is the most common side effect of chemo. I believe it. But since Jim is not sleeping at night he doesn't want to nap during the day. As he says, "It will disturb my night sleep." Well, his night sleep stinks anyway, so why not sleep when you can? This afternoon he was very tired -- this is 72 hours after chemo -- and dozed in front of the TV watching football. (I don't blame him!) However, when he does wake up from little cat naps he feels a mite better. Think how good he'd feel after 8 straight hours of sleep. But that's not what happens. His sleep is in three or four hour spurts, with a couple of hours of wakefulness in between during which he roams the Web or reads. I have moved into the guest room in order to get a good night's sleep. Sometimes I do; other times I wake because I hear him roaming around the house. But for the most part, I am sleeping well, eating well, and doing my best to keep everyone's spirits up.

And speaking of spirits, his are almost always high and positive. He is very uncomfortable and unhappy about not being able to eat (!), but knows it will be over soon. The doctors' positive feedback has done much to cheer both of us.

The Tonsil War

The Tonsil War

I have decided to keep a running blog about the health adventure we are on. Although I have been sending weekly updates I would rather do it on a day-to-day basis as there is much that happens along the way and much I forget. Read as you wish; forget the rest!

Yesterday, Friday, marked the half-way mark for radiation; Thursday marked the half-way mark for the total treatment, chemo and radiation. We are now in the middle of the tunnel with a faint light off In the distance. When we started, of course, there was only the looming maw of the tunnel opening and no light at all. But Jim is now at the tail end of Week 4; Wednesday marks the beginning of Week 5. It feels like there is an end in sight.

Today, two days after chemo, he is not feeling too hot. The symptoms are like the flu; achy, slightly nauseated, tired, listless. He is full of anti-emetics to keep symptoms at bay, and they work pretty well. In fact, he has not been sick (as in "toss your cookies") yet. The first chemo had a much more debilitating effect as he was receiving an additional drug in conjunction with radiation. But he developed an allergy to it (or it to him) and is no longer on it. He is feeling altogether much better without it. The plan for this afternoon was to go see "Little Miss Sunshine" at the local cinema, but as the time grew nearer he decided to stay in and watch "The Saragossa Manuscript" on DVD instead. Thank you Netflix.

An interesting side-effect of this treatment is cold. That is, Jim is always cold. He wears heavier clothes, sleeps with piles of blankets over him on flannel sheets, builds a fire every evening, and really can’t get warm enough. After treatment his hands are very cold. The weather here is still quite warm; it is 83º today and he is wearing jeans, a turtle neck shirt and a long sleeved flannel shirt. Me? Shorts and a T-shirt and sandals. (I actually had to go buy a pair of “closed” shoes as we are never here in winter and I only have sandals in my closet.)

The biggest drawback to this treatment is that Jim’s taste buds have been fried. He can no longer taste anything at all. He has lost interest in eating (IMAGINE!). The idea of eating is there; the reality is that nothing is appetizing. He is using his liquid supplements more and more, not because he can’t swallow (a distinct possibility in the next couple of weeks) but that nothing tastes good and therefore he doesn’t want to put it in his mouth. So he just pours it through his feeding tube right into his stomach! OK. That’s as graphic as I’ll get.

The World Series is about to start. Nothing – not falling-out hair, turbulent tummy, fried taste buds, plowed up throat – will keep Jim from his appointment with baseball.