Life with Cancer -- Ray Stevens

The light is getting brighter! Contrary to expectations, Dr. Drakes (the oncologist) is ready to let Ray come home on Friday. The discharge planner is doing her part, too. He will come home WITHOUT a hospital bed (no room in our house for one anywway!). with a wheelchair (a compact model to facilitate moving around the house), with the tub transfer bench to get in and out of the bathtub, and with both a grabber to reach things and a sock putter-oner to reach his feet. These are very good things!

Meanwhile, the nausea persists. Dr. Drakes feels like it is caused by the heavy narcotics he has been given for pain control, so cut back on his pain medication. Today Ray has complained bitterly about pain in addition to the nausea. I think it has more to do with the potassium and magnesium he is being given, coupled with all the antibiotics. I'm no doctor, but I know how he has reacted with those medications over the last two years. Nausea and more nausea.

Wouldn't you know it's supposed to rain on Friday?!

Give thanks! Keep praying!!!

There IS light at the end of the tunnel. Ray may have to wait in the hospital until his course of IV antibiotics is complete -- another 10 days. Or he may come home as early as tomorrow -- very unlikely, but possible.

Someone is making noises about sending him home with a hospital bed. They will have to build a new room on the house to do that -- we have no place to put a hospital bed, and no place to store an existing bed while he is using a hospital bed. I shall have to put my foot down on that one.

Meanwhile, he has had two rather rough days thanks to ongoing nausea. But there have been no fevers for several days, and on each good day he is able to walk farther than the previous good day. He is getting nourishment from powdered protein drinks from the health food store (40 gr. protein per drink, plus assorted other nutrients ...) which can be blended with the liquid of choice. I have been using just plain water and lots of ice. Not cheap, but cheaper than a McDonald's meal and with far more nutrition.

Once he comes home we first have to deal with the dentist and that chipped tooth -- the one that is an anchor for his bridge! -- and then have to deal with the cataract so he can see again. It's hard to be an artist when you can't see what you are doing. But each step will come in its own time.

Meanwhile, give thanks! Keep praying!!

Ray is feeling better today. His nausea is down to minimal, his pain is under control, and he wanted "soft" french fries for lunch. Jack-in-the-Box makes them perfectly. So off I trotted to get him french fries for lunch.

The Physical Therapy folk were impressed. Ray got himself up into the walker and was heading for the elevator before they got him turned around! That's farther than he has ever gone since he has been in the hospital this time. He is no where near up to his level of mobility just before he came into hospital, but he is aiming in the right direction.

On the down side, his right eyelid was beginning to get red and puffy and the eye has been watering all day. The site where the new Hickman line (the new line for IV use) enters his chest is also looking red. The nurses think I am being a fussy old lady to call these changes to their attention, but I'd rather that they know about them NOW that three days down the road when it is too late to be proactive. I was vindicated when they called Dr. Le and were told, "I saw that this morning and wrote an order asking you to observe carefully and report any changes."

The current plan is to move Ray over to Transitional Care/Rehab on Tuesday. Pray that these two red spots don't blossom into another life-threatening hospital-induced infection.

Give thanks! Keep praying!!!

I was selfish today, and took a day filled with things other than the hospital. I had my hair cut, and attended a genealogy club meeting here in Groveland.

Ray seems to have survived the day without major turmoil. He had a couple of visitors, and several of the staff stopped to visit, too. The fluid they drained out of his lungs does not appear to be growing bacterial or fungus. This is good news. He has to have a full set of clothes labeled with his name (just like in kindergarten ...) to go over to the rehab unit, so I guess that's where he is going next week. Halleluah! That's the first BIG step in coming home. But where do I find iron-on material to label his clothes? I guess we're down to the "when in doubt, try Wal-Mart" plan. Maybe some iron-on patches will work for a temporary fix!

Give thanks! Keep praying!!!

This has not been one of our more inspiring days. Ray was taken down early to the Radiology Dept for a CT scan. He thought McDonald's Chicken Nuggets and a small coke would taste good for lunch, although he has been plagued for days with nausea. I started my morning by mopping floors -- the laminate had been badly abused by muddy work boots and has been begging for a thorough mopping for weeks.

Our case manager was in. Ray is still too ill to consider discharge. Dr. Baumann is apparently saying that he has been hospitalized long enough that he has had more than his share of PT. This is her justification for discharging him straight home instead of to the Transitional Care Unit.

Now there is talk that Ray will be sent to long term care when he no longer qualifies for full medical hospitalization. In order to bring him home, there must be a second adult here full time. Between us, we must be able to get Ray up off the floor if he goes down. We really don't want him to fall in the first place. Somehow, he has gotten the idea that if he falls he will break lots of bones. I haven't heard any doctor tell him that, but it may have been said somewhere. Certainly, a broken hip or leg is not something we want to deal with on top of his current issues.

The good news is that the implanted line removed yesterday had not shown any bacterial growth after 12 hours. We are waiting for results of the CT scan. Is his upper right lung damaged by radiation, does he have pneumonia there, or is something else altogether going on?

Tomorrow is another day. Give thanks. Keep praying.

I have discovered an interesting yet somehow disconcerting fact. If you are not using Internet Explorer as your web browser, you are missing some interesting features of this site. I added something last night and wondered why it didn't appear on my screen. After one of you commented on the new feature, I switched this site over to IE. Wow! There it was!! The new cursor tail!

It's a good thing we took pictures of Mr. Pumpkin yesterday. He's a bit saggy today, and will need a toothpick or skewer treatment to revitalize himself tomorrow.

Ray sailed through the installation of the new, less invasive (and therefore less prone to infection) port today. But he spiked a fever again last night, so the old central line went down to the lab to see if it was contaminated with bacteria. Today's chest x-ray is not conclusive for pneumonia, so a CT scan has been ordered for Wednesday to define what is going on in the upper lobe of his right lung -- pneumonia, or scar tissue around the tumor site. Meanwhile, he is in for a couple of days of periodic thumping on his chest to get any accumulated material loosened and out of his lungs.

It's still Baumann vs. Le-Drakes in the debate over Transitional Care vs. Home Care, so his move from the regular hospital is still in limbo. While I would like to have him home soon, we accept that it is unreasonable for Ray to be here if he cannot comfortably get from bed to bathroom and back to bed.

While it sometimes feels like he is taking three steps forward and four back, Ray really is stronger and more independent each day. For that, give thanks. Keep praying!

Although he is looking better, and is visibly stronger each day, Ray complained of nausea and general "I don't feel so good" most of the day. The right Physical Therapy team came to see him this morning, and he again walked the 20 or so feet out into the hall and back -- despite the nausea which has been known to make him turn away other, less assertive, PT teams.

This afternoon "we" carved the pumpkin. Ray chose the design and actually tried his hand at carving, but found he had neither the control or the vision to finish the job. So I spent the afternoon sawing away at little bits of pumpkin. Then, because I knew candles would not be an acceptable alternative in the hospital, we filled the guy with Christmas lights from Wal-Mart. He was elated with the result, and just the fact that we were doing something together that was not a 'hospital' thing and that we both enjoy was pleasing.

Saturday. Ray received two units of blood overnight, which made for a sleepless night -- vitals every 15 minutes while receiving blood! So he was tired and grouchy all day.

I went to the brand new Delta Blood Bank in Sonora, which you can see from his hospital window, to replace one of those units. The DBB facility is opened Wed-Saturday -- afternoons and early evenings, except on Saturday when they are opened 9-3. Ray has received 17 (or maybe I lost count and it's 19) units of blood this year. If you can give blood, a pint to Raymond H. Stevens at Sonora Regional Medical Center would be appreciated. Wait 8 weeks, then give another pint for yourself, opening your own blood insurance plan. Well worth the annual trip to the blood bank. The gals at the desk in Sonora have put his name on the "someone in the community who needs blood" list, too.

At the blood bank I received a free pumpkin for my donation, so today I will arrive at the hospital armed with newspapers, garbage bags, a pumpkin, and a carving kit! I asked yesterday if we could make a mess in their hospital room, and they said, "Sure! Go for it!" So today we are caving a pumpkin. Look for a picture of the result in tomorrow's post!

There is still a debate going on about when or if Ray will get to Transitional Care. There are currently no beds. There is a waiting list. I don't know where he is on that list. That may be why Dr. Baumann is recommending home health care. Meanwhile, Ray has developed a (too-)healthy fear of falling. It had best no interfere with his adventures down the hallway.

Give thanks! Keep praying!!

Doctors treating illnesses overrule rehabilitation doctors. Drs. Le and Drake were horrified to hear that Dr. Baumann wants to send Ray home. They concur that he is not well enough to come all the way to Groveland without risking a major setback. They are concerned about his intermittent fever spikes and his stability when walking. I, too, have concerns about statilibty. He must be able to reliably get from bedroom to bathroom (at minimum) without risking a fall before I will be comfortable having him at home. So ... we wait for a bed in the Transitional Care Unit.

Meanwhile, a new port -- a different type of port than he had before -- is scheduled to be put in on Monday. One of my least favorite surgeons is scheduled to do the work, but he is better than the other available choice. Besides, this is a simple procedure with miniscule chance for screw-ups. If Ray is strong enough to come home before he has finished the course of antibiotics, then I will be able to start the medications myself.

The good news? Yesterday (Friday) he walked all the way out into the hallway outside his room before turning around and heading back to his chair! Yes, he had PT right there, but he did the hard work himself -- got up, moved the walker, did the walking.

Give thanks! Keep praying!!!

Each day brings something new. The rehab doctor came in this morning shortly after I arrived. She has been talking with the case manager -- the person who deals with the insurance company. There is a concern that Ray is developing hospitalitis -- he is too comfortable with being waited on hand and foot and doing very little for himself. The suggestion is being made that he be sent home and receive -- courtesy of the insurance company -- a home health aide, an RN to supervise his medication, and physical therapy. All these things would happen at home.

The physical therapists who have been working with him think this a GREAT idea. They believe that he will make better progress at home, and that the physical therapist at the Transitional Care Unit will not push him to his REAL limits. Today, for example, he complained that he was nauseous and turned away the occupational therapist. But the physical therapists don't take no for an answer. They got him out of bed and walked him from the bed to the door of his room and back again. That's more than he has done in a month. He was pleasantly surprised that he could do it!

Meanwhile, no one has been able to place the PICC line. He needs the PICC line in order to receive IV medication at home. He needs another 4 weeks of IV antibiotics as a part of the endocardytis treatment that they are doing 'just in case', since he managed to get himself re-infected two weeks ago. They tried placing the line in the Radiology department where they could see what was happening inside his body, and discovered that the vessels in his arm they need to use are not open enough to receive the tiny catheter. They are supposed to try the other arm tomorrow. We don't know yet what they will do if they cannot get the PICC line inserted. There is talk of an alternative type of port, and of putting the PICC line in the groin -- which leaves it vulnerable to infection.

So on one had we are glad that Ray may come home sooner rather than later. On the other, we don't know how to get him the medication he needs to prevent another episode of massive infection.

Give thanks! Keep praying!!!!

Wednesday. Ray is getting better and better. His cathter is out. He was a bit nervous, worrying that he could control his bladder after all this time, but has had no problems. He is off the IV feeding, which means he either eats what comes on the hospital trays, what comes from home, or goes hungry. An attempt to put in a PICC line was made today. This is done by nurses, similar to putting in a regular IV line. But it is a super-fancy IV line intended for long-term use and requires some special skill. One of the nurses who does PICC lines has an arm problem so is unable to do delicate work. The other in on vacation. There is a third RN who sometimes does PICC lines, but she was unable to get one into Ray's arm. So we wait, and he continues to get his antibiotics (required since he is being treated for endocarditis) via the sub-clavical line.

Meanwhile, the PT folks are working Ray overtime. They were going to take him out in a wheelchair today, with Ray rolling the wheelchair (while sitting in it!). I noticed that the chair was in his room, but he didn't tell me that he had been out in it yet. I don't know whether he didn't go, or if this is supposed to be a surprise for me. We shall see what tomorrow brings. Meanwhile, we wait for a bed in the transitional care unit. He isn't really interested in transitional care, just wants to come home!

Give thanks! Keep praying!!

Ray was very much better yesterday. By the time he called me at 8:30 he was already up and sitting in a chair. When I arrived at the hosptial about 10:00 he was "packed and ready" to roll out of ICU and down the hall to a regular medical bed. This time he is in a quiet location far away from the elevators. If he got up and looked out his window, he would have a view of the mountains to the south and the Wal-Mart parking lot.

Dr. Le is very pleased with his progress. He commented yesterday, "You have come a long way. You almost died on me. But you have no more fever, and you are getting better now." Thanks be to God!

The plan is that he will get a new, semi-permanent line (called a pic line) for IV access on Monday, removing the current sub-clavical line in from his chest. Then he will move to the Transitional Care Unit (in-patient rehab) on the other side of Sonora as soon as there is a bed available. He will be there until he is sufficiently mobile to get himself out of bed and at least to the bathroom and back.

Depending on his ability to do for himself -- create a lunch and respond in an emergency, for example -- he may need someone with him in the house all the time. If you live in the area and are one of the many who has offered to help however you can, be prepared! We may be taking you up on your offers!!

Thank you all for your prayers and good wishes. Contiue to give thanks. Keep praying!!

Ray is back! He is still on lots of antibiotics, and he still sleeps a lot, but this evening he was awake and could carry on a reasonable conversation, and KNEW what he was talking about. He was willing to try things for himself -- eating, drinking, squeezing the soft rubber ball. He needs to work on stretching the muscles in his calves, and (at least tonight) was willing to do that, too. The staph infection is under control. Of the two blood samples taken yesterday, one was clear of strep and the other was not. That means something is working on the staph infection, but has more work to do. He still has weeks of antibiotic ahead, but we can deal with that if the nausea is controlled. I don't see him moving to transitional care (aka inpatient rehab) before the weekend, which means it likely will not happen until at least Monday. But that is still a target.

My Hawaiian grandmother used to tell me that every could has a silver lining -- if only you look hard enough to find it. It is true.

Give thanks! Keep praying!!

I missed yesterday at the hospital over paperwork, but Ray called at least six times during the day. He sounded good, and apparently did well. Today he was hurting, not quite so good, and tired. Nancy Ruth, another of our 'big kids', came from Palo Alto and he very much enjoyed her visit. Jeff stopped by, too.

Ray was nervous all day. Dr. Drakes, the oncologist, "said" this morning that now there is a problem with his heart. Someone else told him that on Tuesday they were going to do a bronchoscopy to see what was going on in the lungs and perhaps suction out more fluid. Dr. Le explained this evening. He had noted in a report that a bronchoscopy was as possibility if Ray's condition did not improve. Some overanxious RN (we think we know who) told Ray he was to have the bronchoscopy. According to Dr. Le, Ray has improved enough that the bronchoscopy is not necessary. BUT ... within 48 hours of removing him from antibiotics, the bacteria was once again in Ray's body. That's what caused the fever spike and the rush back to ICU. Although the cardiologist that did the TEE to look at his heart early on pronounced the heart healthy and without endocarditis, there was an unusual thickening on the aortic valve. (Don't I parrot well? As if I knew what I was talking about here!) He said (and I heard the cardiologist say this), "This is suspicious, but I don't believe it is endocarditis. His heart looks very healthy." But because the infection came back, Dr. Le and Dr. Drakes have decided to treat Ray as if he had endocarditis -- which means 6 weeks of IV antibiotics. Once he is medically well, the pain is under control and the Rehab people led by Dr. Bauman feel he is mobile enough to go home, he will come home. He will be fitted with a pump device to keep the antibiotics going, and someone will teach me how to connect everything up so that he gets his medication every night. Connections I can make; needle sticks are a different story, and that's not required.

Give thanks!!!! Keep praying!

He is back in ICU. He spiked another fever early this morning, and back down the hall he went. Dr. Le says he has developed a hospital induced pneumonia in the original tumor site. Hospital-induced pneumonias are far more difficult to treat than pneumonias in the outside world, and Ray is a particularly difficult patient because so much of his lung tissue was damaged in treating the cancer -- a function of the size of his original tumor. I was at the hospital only a few hours today. If I don't tend to some business ....

In the time I was there, he had already begun to improve. He was breathing better than he has since he first went to the hospital (using one of those "suck-in-and-keep-the-little-ball-in-the-air" devices you get every time you hospitalized. He ate a whole 8 oz. of yogurt -- but could not feed himself. The respiratory therapist is busy sucking guck out of his lungs and beating on his chest to break up the fluid that is collecting there.

Dr. Le is going to try to qualify Ray for a special vibrating vest developed for cystic fibrosis patients. It acts like the pneumatic "thumper" but is designed so the patient to control the treatment and receive it more frequently.

Dr. Drakes was in today and reported that the good news is that the cancer is 'doing well'. Translation: Ray is kickin' cancer's butt!

Give thanks! Keep praying!!

When I arrived at the hosptial this morning, Ray was just ready for the physical therapists to help him out of bed and into a chair. He did most of the lifting by himself, although his is still not ready to walk more than the two steps from the bed to the chair -- and that is more a pivot than a walk. But he sat up for several hours, visited with a friend and enjoyed the attntions of the respiratory therapist who uses a percussion machine to break up the fluids in his lungs, helping to cough them up and out of his system.

The lunch tray arrived, he complained of nausea, was given a shot of Ativan, and disappeared for the rest of the afternoon into a deep sleep. OK, his body needs rest to heal. OK, the medications make you sleepy. But we had to WORK HARD to wake him up for dinner.

I think we have figured out the nausea tricks. We have to give him food he finds tasty. My mother ordered us a box of peaches from a fancy fruit outfit in Oregon -- if you live in the US, you've probably seen their brochures. Not wanting him to miss that treat, I took him a peach today -- sliced and ready to eat. He devoured it. He said that mashed potatoes turned to glue in his throat and stuck just at the larynx. I suddenly remembered that a co-worker told me the same thing many years ago. Basil had lost half his lower jaw and tongue to cancer, so could no longer eat 'real food'. "You'd think that mashed potatoes, at least, would go down because they are soft. But no, they turn to glue in the throat." So this evening he didn't eat the mashed potatoes. And didn't get sick. The hospital kitchen is helping, too, by finely chopping the meat on his meal tray. It doesn't improve the flavor, but helps with the chewing-and-swallowing process. A friend brought him in some stew today, but gave it a quick spin through the food processor first. That's on tomorrow's menu.

Dr. Le came in this evening just before I left. He is pleased with Ray's progress, but is naturally concerned about what he is not eating. He is going to order milk shakes. Maybe that will work, although sweets are not high on Ray's favorite list these days. Yogurt is still the basis of his diet.

He will probably move to rehab early next week. He may need more blood tomorrow or Sunday. But he is getting better.

Give thanks! Keep praying!!

Thursday evening. I am having trouble remembering what day it is.

Ray woke up this morning having difficulty breathing, so went on a treatment program by the respiratory therapist -- medicate with a 'steam-like' process, "beat" on the lungs to dislodge the congestion with a pneumatic device, then suction out everything they can ---- repeated at 8 hours intervals.

It appears that most of the pain he is feeling is from a severely arthritic back, with herniated discs pushing backward into the spinal column to cause the pain. This is aided and abetted by restricted movement from arthritis between the bony segments of the spinal column. They will experiment with his pain medications to find the best combination, then teach him exercises to care for his back. He is back on the Duragesic patch, and taking metadone for additional pain relief. Hopefully they can control the pain without making him a zombie -- which he has been for the past couple of days. Not a pretty sight. Pick up spoon, take one bite, sleep for 15 mintues, maybe wake up and take another bite. He cannot communicate with the doctors in that state, because he cannot coordinate his thoughts to answer a simple question, although he does appear to understand most of what is being said.

But he is alive, and there is hope for recovery.

Give thanks. Keep praying.

The transition from Intensive Care to the regular medical floor has been something less than smooth. In ICU they had finally begun to level out Ray's pain medication so that he didn't hurt too much and was still coherent. For the past two days he has either been in lots of pain or he has been like a zombie. Neither is particularly acceptable.

Whatever the doctors are that lead the rehabilitation teams, there is a new one in Sonora who has a bunch of special skills in using nerve blocks to control pain. He saw Ray this morning and was supposed to come back this evening. He ordered to x-rays in the process -- both requiring that Ray stand to have the x-ray taken. One was standing straight. The other was "frog-leg". Considering that the man can barely stand for a minute or two, and never without using a walker or two strong men to support him, those x-rays were impossible. The compromise was a pelvic x-ray taken in the hospital bed, but that didn't happen until 7 pm. So .... no docotor tonight. That's a shame, because I have to run errands tomorrow morning before I go to the hospital -- which means I will probably miss Dr. Duclair again. Maybe Ray will be less foggy tomorrow and able to remember what he wants to do.

We've still had no luck on the food front. He is nauseous again and nothing wants to stay down -- even things that he normally enjoys eating. In ICU they suggested this was from the Dalaudin begin given for pain medication -- so he was switched to 1/2 a methadone tablet every 4 hours. On med/surge he is getting a whole methadone tablet every 8 hours. You'd think the two dosages would do the same thing, but there's a marked difference in his alertness today.

I am very frustrated. Would feel better if I could get straight information from someone. That's not happening.

Give thanks! Keep praying.

Ray transitioned today into the regular medical/surgical floor, where he is less closely monitored and where each RN has more than two patients to care for. He is visibly better. He called me on the telephone twice today -- once in the morning, once in the evening. He ate two meals more or less on his own. He did some exercises with the physical therapist -- more than just dangling his legs over the edge of the bed or sitting in a chair for an hour or so. He is definitely on the mend! Thanks be to God!!!!

Me? I'm frazzled, and will be very happy when he can come home and I can stay at home for a day or two. It rained last night, and the pick-up chattered and skittered on the wet roads. Today I had to stop and put some sand in it for weight. Marilyn Bodle at Down to Earth earned a set of Angel Wings by running home for some feed bags, had them filled with about 50 lbs. each of sand, loaded in the truck, and locked in place with a rachet bar that we bought just before Ray got sick this time. The truck is much better behaved now! Tomorrow my car goes to Jamestown for diagnosis. With luck, the problem will be simple like a stuck thermostat or a radiator in need of flushing. I dread the thought of what else could be wrong.

Give thanks!! Keep praying.

I had just come to the computer to write this morning when the telephone rang. It was Ray, obviously in distress. "I am not doing well today. Cam you come now?" I found myself standing in the living room with a cell phone in each hand and trying to make a call on the house phone, too. By the time I had dressed and gotten to the truck, it occurred to me to call the nursing station and find out what was going on. Seems that this was an emotional crisis, not a physical one -- but just as real.

Physically, Ray is doing reasonably well. His counts are mostly within normal ranges. We know he has been anemic for years, but the white cells and platlets are once again in normal or near-normal ranges. But there are the vicious circles -- he needs to eat for nourishment, but because of the persistent nausea he is afraid to eat. Also, with that wretchen tube through his nose and down his throat it is very difficult to swallow. At least one RN said that he would be unable to swallow real food as long as the tube was in place. Second, he needs to move -- but his pain level is high enough to quash that idea, too. Today he was started on a regimen aimed at bringing down his pain levels -- including returning to synthetic morphine and adding a muscle relaxant to ease the back spasms.

I still do not understand what is going on in the back. It seems to be a degeneration and compression of the discs common to those who do lots of hard physical labor in their younger years. We all know those years -- the ones where we are invincible. Now we pay. At any rate, we need a clear explanation from one doctor or another re. Ray's back.

By the time I left today -- early, because it is raining this afternoon -- he had calmed down dramatically, was taking his pain meds regularly, and was getting ready to go to sleep. Good thing. He needs to rest.

Give thanks. Keep praying .........