Sunday, Dec. 27, 2009

This has been a busy week, as my family is visiting. Tommy continues to hold his own in the gym and at the dinner table--good walking, good eating, generally good all around. As I have said so many times before, simple peace and "not too much happening" has shot to the top of my list of "good news" in the past year and a half; and therefore, I wish all of you simple peace as a baseline for 2010 and if you care to embellish on that, go for it. And, to all of you, thank you for the calls, cards, e-mails and visits over this year; we are always so happy to be in touch with you.

Saturday, December 12, 2009

Lest anyone think that Tommy Long has lost his sense of humor or his, shall we say, drive, consider his response to a question this morning. It was when we were doing his morning relaxation exercise. This occurs while Tommy is still lying in bed, and it consists of me telling him to send a message from his mind's eye down to each part of his body; and the message is, "relax". We start with each arm; then the legs; then the bladder; then the intestines (aka what I call his "sh*t mine", which is to say that I ask him if he wants to tell the boys who are in there shoveling the sh*t for him if he has a message for them, to which he usually responds, "Yeah...thanks, boys; take five"); then his stomach; then the guys plucking on his vocal cords; and finally his schwaz. So this morning I asked him, "Do you have a message to send to your schwaz?" "Yeah," he said, lifting his head and looking down there. "Find a woman."

Thanksgiving Day 2009

We are still enjoying the fall. We've been in touch with lots of family and friends in the past few weeks. The nor'easter earlier this month gave us a scare with its high flood tides, but although the house was totally surrounded by water and we had to move out for two days (thank you, Irv!), the house stayed dry. Tommy is still going to the Tidewater gym two mornings a week, where Bob Cairo, a prince among men, keeps an eye on his progress. We had a lovely day today, with my brother serving as turkey sous chef and a visit from Marty Wolfe, one of Tommy's former boatyard employees. Marty got a huge smile from Tommy when he said, "You look good, Tommy--almost as good as me!" Everything seems to be going our way right now, and for that we are most thankful. Amen.

Friday, November 6, 2009

It's been a really relaxing and beautiful month since the last entry in this blog. The bright, sunny days are growing steadily more bracing, but that's okay because we have the firewood ready. Tommy still goes to Tidewater "gym" two mornings a week, where he rides the bike for a good half-hour and Bob Cairo walks with him using the walker. We will soon get back to walking on the back porch--as we were doing before the great gall-stone disaster set Tommy back for the summer. So, we are slowly but surely working our way back to where Tommy was in the late spring. Two steps forward, one step back does seem to be the way of it. Tommy turned 74 on Sunday; we had a dinner party for him with everyone bringing a dish to supplement the leg of lamb that I roasted for him. He heard from many family and friends, both with phone calls and cards, and had a wonderful day.

Tuesday, October 6, 2009

We are enjoying the fall so much--fall as in autumn, that is, not as in down you go. Good news, too, from Bob Cairo, Tommy's primary therapist at Tidewater Physical Therapy right here in town, where Tommy and I have gotten so much help. Bob is going to let Tommy come twice a week on his own dime--a very reasonable charge--now that Tommy's prescription for physical therapy has run out. Patti and I are going to throw a big cook-out later in the month, and I'm thinking Tommy could help out by serving as judge for the pumpkin-carving contest.

Friday, September 25, 2009

Tommy has continued to get back up to speed, and in a week or so he should be back to about where he was on Memorial Day weekend, when he went to the emergency room as all his looming problems came to a head. He is now again able to take all of his weight when doing transfers, and soon he'll be walking those dozen or so daily "laps" on the porch with the walker and me assisting. Bob Cairo and his staff at Tidewater rehab have done a great job helping Tommy; he may actually have only another week or two at Tidewater before his prescription runs out. Then we'll be on our own again for therapy, but I have learned a lot from the Tidewater folks so we'll be ready.
Yesterday evening we went to the VFW for the post's last crabfest of the season. It was Patti's birthday party, so we had a tableful of pickers with flowers and a cake to top it off. We sat at the far end of the enclosed porch, with a fabulous view of the sunset over Indian River Bay. Patti's neighbor Gordon very kindly picked crabs for Tommy, allowing me to kick back for a while. It was a very pleasant way to end the summer.

Monday, September 21, 2009

We had a hunky dory weekend. Tommy is getting back to where he was before (aack) Memorial-Day-in-the-Hospital weekend; and we are in the midst of those incredibly bright, breezy early fall days; and, to top it off, we celebrated both Patti's and Irv's September birthdays on Sunday with a feast supplied mostly by Patti, with me throwing in the corn and tomatoes. We spend several hours a day just dozing on the sun-warmed back deck with the dogs. More days like this, please.

Thursday, September 10, 2009

Tommy is still struggling with the g.i.-tract problem; it has caused him much off-and-on discomfort and also kept him from two of his three physical-therapy sessions this week. Yesterday, Irv and I took him to see Dr. Giddins, who told me to continue with the regimen she recommended last week, plus to give him one packet of MiraLax every morning. She also ordered an X ray; so, when we left her office, I took Tommy down the street to the Beebe Imaging outpost, where the staff were wonderful and fun, too. We will see what the X ray shows and also how Tommy does through the weekend.

September 8, 2009

Just when things seemed to be looking up, Tommy came down with a really bad case of constipation early last week, and he's been struggling off and on with it since then. His doctor said to add Colace to the efforts I was already making, which has helped a little bit. If Tommy isn't strong enough to go to physical therapy tomorrow (he missed two sessions last week), I am going to ask the doctor to send in the nurse again, and maybe she can come up with a plan. In spite of his slowdown, Tommy was able to join Irv, Patti and me for our "farewell to summer" cookout dinner on the porch last night. Patti brought several wonderful salads made with the last of the summer vegetables (including her own luscious tomatoes), and Irv grilled Italian sausages. What a feast. Needless to say, Tommy's plate was heavy on the veggies (fiber) and light on the meat. His appetite has been flagging the last few days, but not last night, which made us all happy.

Monday, August 31, 2009

With the Tommy blog, no news is good news. When everything is ok, there's less to say. (Who was that modernist architect who said, "Less is more"?) We have been enjoying lots of phone calls and visits on the back deck with friends. Somebody lobs the tennis balls for the dogs with the Chuck-it that Diana and Larry brought us, and somebody grills something, and we pass around the binoculars and watch the jet-skis dodging the fishing boats dodging the kayakers in the creek. Tommy is working hard in his three-times-a-week therapy sessions. He's still a "moderate assist," but that's fine; he lost a lot of ground during that setback in June and July. Ugh...I'm not even going to try to count up the number of doctor visits and blood-giving sessions for those two months alone. Now, everything is going in the right direction, and Tommy's blood work is "normal", and normal never sounded so good. In other words, we are more than happy with less. Except for family & friends. We are so grateful for all the love you guys out there have sent our way, in so many different forms. We look forward to seeing and/or talking with all of you as we move into fall.

Friday, August 21, 2009

This week we've been relaxing into our summer--finally. Tommy is now in outpatient physical therapy. The therapy practice, called Tidewater, is close--maybe a half-mile toward the ocean from the Food Lion. Tommy will have three sessions a week for a month, possibly longer. Tommy really likes the folks there, and I do too. Besides working with the therapists, Tommy does about eight minutes a session on a machine that he loves and that is perfectly suited to him. I looked it up on the internet: It's officially called a "recumbent step trainer," and it's top of the line. Of course, it costs a small fortune; on eBay, the closest used one was in Indiana, and it was going for $2,600. Plus, shipping would cost a small fortune. So, no go for adding one to the home gym. However, I'm going to check with the senior center workout places around here and see if any of them have one; if so, maybe we can join after Tommy is finished with outpatient therapy.
We had a visitor from DC for the last couple of days named Onka Dekker. She's a woman about my age who worked for Tommy a long time ago, i.e., she's one of the "boatyard family" and has remained friends with our friend Capt. Steve Doles, who is now in Florida. Onka painted boats for a summer, and says that she loved working at the boatyard because it was such a refuge from the craziness of the city. She has returned to college to get a degree in history and is writing a paper on the closure of the boatyard, so she came to interview Tommy. It was a fun visit.

Monday, August 17, 2009

All systems are go with Tommy, and he continues to get his strength and his weight back up. Today was the last session with Scott, the physical therapist from PRMC's home health-care network. Now that Tommy is finished with home health care, he will get help at outpatient therapy for a month, and possibly longer. He has almost worked his way back to where he was when his liver problems happened during the spring and early summer. After the last few months, we are both still having trouble believing that we can relax and begin to enjoy summer!

Friday, August 14, 2009

This week, Tommy again gave blood for the follow-up to the endoscopic gall-stone removal procedure in June, to make sure that his liver enzyme numbers were getting back to normal. Today we got the results, and we were thrilled to see that all of the numbers are now back down in the normal range. For example, the normal range for alkalyne phosphatase is 40-129 units per liter. Prior to the procedure, that number had skyrocketed to 877; it is now 120. To celebrate, Tommy said he wanted to drive down to Ocean City for crabcakes, so that's what we did for dinner.

Tuesday, August 4, 2009

Today's photo is a shot of Tommy with his occupational therapist, Megan. That green blob in Tommy's hand is basically "silly putty" (it's called Theraputy--no kidding--when it's sold for three times the cost of the kids' version and used to help people improve their hand and finger coordination). Tommy's job is to roll it with both hands, pull it like taffy, roll it into a donut and then stretch it thinner by putting it around his cupped fingers, or flatten it out like a miniature crust for a pizza (which he's doing in the photo). Yesterday was Tommy's last session with Megan, who said that Tommy is doing great and that he and I work very well as a team. Yay. We learned a lot from Megan and will miss her.

Thursday, July 30

On Tuesday afternoon, Tommy got a beard trim (much-needed...I told him he was too young to look like Gabby Hayes). Kirsten (who will be Tommy's home-health-care aide for a month, maybe more) did a great job. Next Tuesday, Kirsten is going to cut Tommy's hair, and she is teaching me in the process. Her husband trained to be a barber and has taught her; she says he doesn't have a barber shop yet but hopes to eventually open one. Kirsten is also a barrel of fun. What a treat.
Yesterday, Tommy saw Dr. Giddins, his new primary-care doctor. She told Tommy several times how great he looks and that unless something else comes up she wants to see him in the usual three months. Everything turned around for Tommy when he saw Dr. DeMarco in Salisbury on July 13 for that emergency "second opinion" on his inability-to-urinate-at-all problem, and Dr. DeMarco took care of that by irrigating Tommy's bladder. During that same visit, his nurse, Jeanne, told me that there is a doctor named Dr. Giddins who is affiliated with their hospital (Peninsula Regional Medical Center, or PRMC, in Salisbury) who has an office right next to our post office in Ocean View! Dr. Giddins saw Tommy two days later, and she helped Tommy get over the pain hump (including making a call to Dr. DeMarco's office while we were there, which was the kind of communication that had not been happening with so many of the doctors we had previously been seeing). Finally, we could get some sleep. Dr. Giddins also called in the home-health-care troops from PRMC (which will now be our hospital of choice), and so for the past week these folks have been getting Tommy back up to speed: Mariel, the R.N. (who helped me with the fine points of catheter/bladder-irrigation techniques); Scott (physical therapy, who has a garage full of boats so he and Tommy are instant pals); Megan (occupational therapy, who finally solved my longtime problem of how to keep the bathroom floor dry during the shower when the shower bench sticks out into the room); and, of course, Kirsten.
In the spring, Irv, Tommy and I agreed that our big project this summer would be to go surf fishing. So, Irv and I got Irv's pickup truck registered and ready for us to take Tommy surf fishing. Now we can finally start to think about that!

Monday, July 27, 2009

We can now safely say that Tommy is out of the woods. The last couple of days, his entire food-and-water-processing system has stabilized and he has slept soundly through the nights. Yesterday morning, I asked him how he felt, and he said, "Like a new penny." What a hassle we've had since he went to the hospital on Memorial Day weekend--first the gall stones, then that horrible bladder problem that came out of left field. But now it looks like we can move on. Yay.

Thursday, July 23, 2009

Yesterday, it looked like Tommy was going to get through the voiding trial without a hitch--after the catheter was removed in the morning, he was able to urinate several times during the day with no pain. However, last night he tossed and turned for several hours; only after I gave him a pain pill was he able to sleep. Fortunately, the visiting nurse is coming today. Two steps forward, one step back.

July 22, 2009

In two days, Tommy will have a "voiding trial" to see whether his water works come back on line when the catheter is removed. The trial will require two appointments--one in the morning and one in the late afternoon. Dr. DeMarco's urology practice is in Salisbury, but on Wednesdays one of his colleagues comes right here to Millville, to the same suite of offices where Dr. Giddins has her office (these doctors are all affiliated with Peninsula Regional Medical Center in Salisbury, rather than with Beebe Hospital up in Lewes). So, on Wednesday, Tommy will visit the doctor twice--and it's only five minutes away. Yay.

Thursday, July 18, 2009

Overall, the past week was very difficult--no sleep turns us both into zombies--but gradually things are looking up a little. Tommy's inability to urinate was such an unexpected problem after that endoscopic procedure--and then, even when he had a catheter, he still was unable to urinate a lot of the time because the catheter was getting blocked up. It was difficult on several levels--I ended up getting that second opinion from Dr. DeMarco (very good move), who saw Tommy immediately on Monday; and Dr. DeMarco will now be Tommy's urologist. Then, yesterday, I changed Tommy's primary-care doctor (a huge move, but necessary for a growing list of reasons); and together, the new team is beginning to move us past this impasse. Tommy saw the new doctor, Dr. Giddins, yesterday; and after conferring with Dr. DeMarco's office, she prescribed a pain killer for Tommy so that he can sleep. Dr. Giddins also lined up a visiting nurse, a physical therapist, an occupational therapist and a bathing aide; each of them will come twice a week for a month and possibly longer. The home-health nurse is coming today, sometime between 12 and 1.
This month, I especially thank my lucky stars for Gaie (for her invaluable phone support) and "the three Musketeers" (Irv, for his unflagging help; Steve, for making it possible for me to attend the wedding in Michigan of my godson Jesse; and Marshall, my brother, who came for nine days and helped in myriad ways, including yeoman chef service).

Tuesday, July 14, 2009

After a very rough Sunday night, due to Tommy's bladder shutting down (it turned out to be a clot/obstruction where the bladder drains out into the catheter tube), the "second opinion" urologist agreed to see Tommy yesterday morning if I could get him over to his urology team's home office in Salisbury, Maryland. Thank goodness for that. The urologist, Dr. DeMarco, who is very good, got up to speed with Tommy's overall medical situation amazingly quickly. Just as Dr. Caruso had done with Tommy's difficult liver-enzyme problem, this doctor immediately laid out a treatment plan that was just what I had hoped for. Then, to allow Tommy's bladder to drain, he and his nurse, Jeanne, irrigated it using something Jeanne compared to a turkey baster, insterting its tip into the outside end of the catheter hose and sending up a stream of distilled water. Out came the bladder's contents, and Tommy didn't float away after all. Then Jeanne showed me how I can do the same procedure at home if his bladder gets stopped up again and handed me a turkey baster to take along. Now to the plan. This Friday, I will take Tommy to Peninsula Regional Medical Center in Salisbury for a renal sonogram and also some blood work. If all looks okay, then next Wednesday, Tommy will see one of Dr. DeMarco's fellow doctors, who comes to Millville once a week to see patients. Tommy will go in the morning. and then again in the late afternoon, for a "voiding trial"; the catheter will be removed in the morning, and then--it is hoped--by the time Tommy comes back in the afternoon, he will demonstrate an ability to send that urine out of his body through his own hose. Dr. DeMarco was careful to warn that sometimes, when a patient, in recovering his functions after anesthesia, loses the ability to control the bladder's functions, it never returns at all. But we have to try. In the meantime, Tommy (and I) had a much-needed good night's sleep last night, and things with the catheter went swimmingly while he slept.

Friday, July 10, 2009

Yesterday, I took Tommy to Lewes for his appointment with the urologist (actually, the urologist's nurse practitioner), who was recommended by the emergency room doctor who put in Tommy's second catheter last week. I thought this would be a relatively straightforward procedure; i.e., that the nurse practitioner would take out the catheter and give us strategies and exercises to help in getting Tommy back to normal so he can urinate. But, instead, he ordered a total workup of Tommy's urinary system...tests, blood work, CT scan at the hospital of Tommy's one kidney... instead of being removed, he said, the catheter would have to stay in for more than a month longer. That delay is worrisome, because if Tommy's problem is neurological--i.e., if something about the endoscopic procedure such as anesthesia temporarily shut down his brain-to-bladder connection, then it seems possible that the longer the catheter remains in, the more difficult it will be for Tommy to relearn how to control that function. In any case, this morning I found out that there is a urologist right here in Millville, and so I have booked Tommy to see him on July 22 for a second opinion. I've never gotten a second opinion before, and if this doctor agrees that the catheter needs to stay in for another month and that all these other tests must be done, so be it. At least this urologist is only five minutes away rather than almost an hour away (I wish the emergency room in Millville had recommended him in the first place!), so it will be worth the extra effort.

Thursday, July 2, 2009

Tommy's enzyme numbers (I took him to the blood lab Tuesday and they came back yesterday) look really good. After a steady and alarming rise since at least December, they have dropped significantly since the endoscopic procedure last week, when Dr. Caruso, the gastroenterologist, pushed out a bunch of gall stones from Tommy's bile duct. So, clearly the gall stone obstruction in the common bile duct was a large cause of the problem--maybe the whole cause (my fingers are crossed). So these lowered liver numbers are exciting. Dr. Caruso will talk with us tomorrow or Monday and he will tell us what the numbers mean and what needs to happen next.
There has been a problem this past week and a half, but nothing on the order of the liver problem. It's with the urinary system. Tommy's bladder hasn't gotten up and running since the procedure, so it's been on-again, off-again with catheters. I had to take Tommy back to the emergency clinic last night to get his second catheter since the procedure--he couldn't have gone through the night without floating away. This catheter will be removed late next week at the urologist's office in Lewes.
Thank goodness, during the summer we have an emergency room right here in tiny Millville--it's a tourist-season outpost of Beebe Hospital in Lewes. It's only a five-minute drive that would otherwise be an hour's drive up to Beebe.

Friday, June 26, 2009

Tommy came through the endoscopic procedure on Tuesday very well, except that he had a reaction to the anesthesia afterward and needed a catheter. That's working out okay and the plan is that it will be removed on Monday. During the procedure, Dr. Caruso got the endoscope down to where the common bile duct meets the intestine; he expected to find a 1-cm. gall stone that had shown up on the tests last week, but that gall stone was no longer there. However, there were numerous smaller gall stones, so Doctor Caruso made a small incision at the junction to allow some of them to pass through. On Tuesday, Tommy will again give blood for a liver panel, to see if the enzymes have come down. If not, Dr. Caruso will look more closely at the liver itself (possibly, a liver biopsy) for the cause of the problem. The good news is that the MRI and the MRCP showed no sign of liver cancer or cirrhosis of the liver. So, at this point, we know there is inflammation, but we don't know why. This weekend, Steve is hanging with Tommy, as I am attending the wedding of my godson Jesse in Michigan. I asked Tommy on the phone this morning if he's having fun with his son, and he said, "Oh yes...he's like an old wife." Steve says that the two of them had a good time watching wrestling on tv last night and that when Steve asked him if he and I ever watched it, Tommy said no. Ugh--that's for sure. So things are looking up for now.

Monday, June 22, 2009

Tomorrow is G Day--gall stone day--the day for Tommy's outpatient surgery at Milford Hospital. At 1:00 today I must call the hospital to get the official time for the surgery. Dr. Caruso's office said last week that it is scheduled for 3:00, but the hospital won't confirm the time until this afternoon. If all goes well, he should be home before dark tomorrow evening. Although Tommy is really tired this week (he hasn't walked for more than a week and his voice is very weak), he isn't in any pain and his appetite is better than it was last week. He was really happy to hear from his kids on Father's Day, even though he was pretty much whispering into the phone. So he's hanging in there, but it ain't easy.

Thursday, June 18, 2009

Due to booking issues, the date for Tommy's surgery has been changed from next Monday to next Tuesday. Yesterday, we spent the afternoon at Milford Hospital (an hour's drive north) for Tommy's preadmission appointments--three different meetings--first with the screener, then the o.r. nurse, and then the anesthesiologist, Dr. "Lisa". (Like Tommy's primary-care doctor, Rajshekar Narasimaiah, she has become known by her first name because her last name is hard to remember.) Last night was rough, as Tommy was tired and also had digestive problems; but today he rebounded, with fifty arm pulls on the wall pulley and 450 foot strokes on the pedal exerciser. Because the bile-duct obstruction is affecting his ability to process fat, his diet is heavy on soups and stews, with no meat but lots of seafood and beans.

Monday, June 15, 2009

Just got a call from Dr. Caruso's office; the surgery is scheduled for the afternoon of Monday, June 22.

Monday, June 15, 2009

Today, we should learn the plan for Tommy's surgery from Dr. Caruso's office. He is aiming for Friday, and his office is in touch with Tommy's neurologist, Dr. Peet, to make sure it's okay to stop Tommy's daily aspirin beginning this morning (so that his blood will not be so thin during the procedure). The diagnosis for Tommy's condition is Bile-duct obstruction; specifically, a stone about 1 cm. in diameter is blocking the common bile duct, which--among other problems--could result in damage to the pancreas if not taken care of quickly. The technical name for the procedure, which the health-care folks call ERCP for short, is Endoscopic retrograde cholangiopancreatography. After Tommy is anesthetized, Dr. Caruso will thread a flexible tube (an endoscope) into his digestive tract to where the common bile duct enters into the upper portion of the small intestine (the duodenum). There will be a cutting device attached to the tube. Dr. Caruso will insert the tube through the entrance of the bile duct, and enlarge the entrance to permit passage of the obstructing stone.
Tommy is unusually tired these days, and I'm sure it's because of the bile-duct obstruction; I am so eager for this surgery to get done so he can get back in the groove. I just hope that's the only problem in that part of his body and that there are no complications. He also has lost his appetite (very rare for him), which is another symptom of the obstruction, so I am trying all the time to get him to eat. I'll just be glad when all this is behind us!
On a brighter note, Tommy did some pedaling yesterday (he hasn't had enough energy to do any walking for several days now), and then in the evening, which was gorgeous, we sat on the couch on the back porch. I put his feet up on the foot-rest, and I stood at the other end of the porch, and we played catch for at least a half-hour with the big orange ball--Tommy was awake and a pretty good aim the whole time, and the dogs kept trying to horn in on the game which made us laugh. So that was a pleasant rebound on Tommy's part.

Friday, June 12, 2009

This morning Tommy and I headed out to get the tests done that Dr. Caruso ordered. We left the house at 6:15 for Beebe Hospital up in Lewes. There, in a single session, Tommy was given two separate tests--an MRI, and also an MRCP (similar to an MRI, and also non-contrast, but targeted more closely at the biliary system-and-liver region than the MRI). On the way home, we stopped at the Beebe system's walk-in blood lab for the blood test (to get Tommy's current liver numbers). When we got home, Dr. Caruso had already called and wanted to discuss the results of the MRCP, which had just been phoned to him (he is a really good doc). Dr. Caruso says the MRCP shows a significant gall stone (about 1 cm. in diameter) in the common bile duct, and he would like to remove it at the hospital at Milford Hospital late next week. His office is contacting Dr. Peet (Tommy's neurologist) to see if it will be okay to stop Tommy's daily aspirin tablet starting Monday, to minimize the chance of hemorrhaging during the procedure. Basically, Dr. Caruso will go down Tommy's throat and digestive system with a high-tech fishing rod and find the stone and somehow get rid of it. Tommy should be ok to go home later in the day unless there is a complication (pretty rare). So, by the end of Monday, we should have a plan in place.

Thursday, June 11, 2009

Yesterday afternoon, Tommy saw the gastroenterologist, Dr. Caruso, who ordered an MRI/MRCP (a pair of non-invasive tests) for first thing tomorrow morning up in Lewes ( we have to leave at 6:15 in the morning...that should be interesting). He also ordered more blood tests, also to be done tomorrow. I am relieved at least because Dr. Caruso is good and it was obvious during the appointment that he is focused on the case and has taken a good look at Tommy's history. Dr. Caruso says that the various indicators of Tommy's problem in the liver/biliary system region are very complex and the pattern is unusual and therefore difficult to diagnose. If the tests tomorrow don't make the problem clear, then he will order a liver biopsy. Dr. Caruso made it clear that he will see it through--all of which was missing for the past few weeks while the various doctors who are involved all saw something different in the tests, and the wheels were spinning.

Friday, June 5, 2009

Tommy is still not out of the woods; his liver enzyme numbers continue to climb. The doctors have been going around and around about whether the problem is with gall stones or with the liver itself. (If the problem is with the liver, it's probably far more serious.) Dr. Raj (Tommy's primary-care doctor) said for weeks that he thought it was a bile-duct obstruction. Then, Dr. Portz (the Beebe Hospital emergency-department doctor, who saw Tommy on Memorial Day weekend) said that Tommy had acute gall stone disease and that he should see a surgeon immediately. First thing after the holiday, I took Tommy to see the surgeon, Dr. Tatineni; but after reviewing the countless tests that had been done up to that point--numerous blood-work reports, MRI, X ray, ultrasound, diagnosis from Dr. Portz--Dr. Tatineni said no, Tommy may have gall stones but they're "innocent bystanders" and the problem is with the liver. Dr. Raj and the surgeon then talked, after which Dr. Raj called us to say that he now agreed with the surgeon. The surgeon referred Tommy to Dr. Caruso, the gastroenterologist; but when we got to that appointment, it was actually with Dr. Caruso's nurse-practitioner, Kelly. She ordered more tests, but this was clearly a situation where we needed the specialist, and I insisted that Tommy see Dr. Caruso as soon as possible. So, next Wednesday Tommy will finally see Dr. Caruso, and I'm hoping he will come up with a diagnosis and a plan as soon as possible.
Meanwhile, though, Tommy has no symptoms of stress in his liver or biliary system (no jaundice, elevated temperature, nausea, loss of appetite, etc.)--which is heartening. Yesterday and this morning, he has been right on target with his physical and speech therapy (we have been doing 30 minutes a day of speech therapy to help him get his voice stronger). Please, if you are reading this entry, give a call and talk with Tommy on the phone (late afternoon/early evening is best--302-539-8079). Talking on the phone, not to mention hearing from friends and family, is great therapy for him!

Wednesday, May 27, 2009

Took Tommy to see the surgeon, Ramakrishna Tatineni, yesterday morning. He has put Tommy on a careful diet for now and has directed him to get more blood work (this morning), then to see the gastroenterologist (Friday afternoon, up in Lewes), then back to see him next Tuesday morning. By then, we should have a game plan. Meanwhile, on Monday, we had our first cookout of the season, with Patti bringing the baked beans and butternut cake, Frank bringing snacks and wine, Irv bringing the muffins and grilling the ribs, and me providing the first local asparagus and tomatoes of the summer. It was wonderful to have friends over and now we're catching up with our naps--between medical expeditions and physical-therapy sessions, that is.

Sunday, May 24, 2009

We had a scare yesterday--Tommy awoke vomiting & with severe constipation, etc.; so, to make a long story short, we spent the whole day at the emergency department at Beebe Hospital up in Lewes. The upshot, after a bunch of tests (and a favorable outcome regarding the constipation) is that I have to call the surgeon on Tuesday morning so that gall-bladder surgery can be scheduled. The official diagnosis is acute cholelithiasis, but the condition is better known to us lay people as gall stones. Tommy's CT scan a month ago indicated gall stones, but Dr. Raj had hoped the condition would clear up; unfortunately, though, it has worsened. At least Tommy was able to come home with me last night. The good news is that Tommy's liver, heart, lungs and intestines all looked basically healthy in the CT scan. Anyone who knows Tommy's history with Budweiser will be as surprised as I was at the fact that "there is no evidence of hepatomegaly or fatty infiltration of the liver." What a day!

Tuesday, May 12, 2009

I didn't know what I was going to slug this entry. But when the moment came, I typed in "We love spring". Then I turned around and said to Tommy, "Do we love spring?" "Yes," he said. "Why?" I asked.
"We got so much ahead of that."
"Like what?"
"Like warmth and sunshine."
Ah yes, warmth and sunshine. We have enjoyed sunshine all day--and in the spring, the sunshine is just right. Right now, for example, we are finishing dinner at the dining-room table, which faces west; so sunshine is pouring in through the front windows. This morning, we did our physical-therapy session on the back porch, which was also bathed in sunshine because it faces east. In this morning's session, Tommy set a new record with 12 minutes of pedaling. I know why he's doing so well with his pedaling: last week, I told him that I would do my free-weight arm lifts in tandem with his pedaling, so that every time one of his feet goes down, I have to lower the five-pound weight on that side and lift the opposite weight above my head. In effect, this arrangement has given Tommy control over my arm exercises--it has turned the tables and made him my trainer instead of me serving as his trainer. And seeing me sweat bullets lifting weights has motivated him to work harder at his pedaling. This morning, for example, as he kept pedaling instead of stopping at the ten-minute mark (for the first time), and as he watched me struggling to keep up with him for those two additional minutes, he was laughing. Ah, the things we do for love. But hey, it is spring, after all.

Thursday, April 30

We have added another component to Tommy's daily physical-therapy sessions: A pair of five pound free weights. After Tommy pedals (usually for about six minutes), walks with the walker (eight or ten "laps" across the porch, sometimes more), and pulls the arm exerciser that is mounted on the wall (50 pulls), we do arm lifts together. Ten lifts per arm, each a lift of only several inches, is enough right now; but it's a start. Yesterday we had dinner with our friend Frank at the Crabcake Factory, and this weekend we will share a potluck meal with Mary and Al, our friends from Ren rehab. And with the spring weather, we have been enjoying the back deck with Irv and Patti. These are good days.

Tuesday, April 21

The news on Tommy's CT scan is fairly good. Dr. Raj says that there appear to be small gall stones obstructing some flow in the bile ducts. Tommy's elevated liver numbers may be caused by these gall stones (which might disintegrate on their own); or the elevated numbers may be caused by one of the medications Tommy was taking, Gemfibrozil, which Dr. Raj discontinued several weeks ago. In six weeks, Tommy's blood will again be tested, and if his liver panel hasn't improved, he will probably need to see a surgeon.

Sunday, April 19, 2009

"You didn't know you were gettin' hung up with a river rat, did you?" These were Tommy's first words to me this morning when I poked my head into the bedroom to see if his eyes were open. It's still true, after all these years, that Tommy has the most colorful language of anyone I've ever gotten "hung up" with!
It's been a good week and a bad week. On the good side, Tommy is walking up a storm on the back porch--yesterday he set a new record of 12 laps (each lap is a trip from one end of the porch to the other, with walker and Connie). On the bad side, Tommy's second blood test again indicated elevated numbers in his liver panel--in particular, the alkalyne phosphatase and the GGT--and when those numbers are elevated, the most likely cause is some kind of obstruction in the bile ducts (such as gall stones, or a tumor, or scar tissue). Consequently, Dr. Raj ordered a CT scan, and I took Tommy for that on Friday; so we should hear tomorrow from Dr. Raj whether we're any closer to solving that mystery.

Saturday, April 11

Last week Tommy was discharged from outpatient physical therapy, so now Tommy and I do daily therapy sessions on the back porch. He has the same basic routine that he had in outpatient therapy: arm exercises and eight minutes on the pedal exerciser, followed by "laps" back and forth on the porch using the walker. Twice this week we met friends for lunch at local restaurants, and we get out for errands every afternoon. He has up days and down days, but overall he continues to improve in his "don't want to rush into anything" way.

Wednesday, April 1, 2009

It's drizzling and cold on this, the first day of April, as spring flirts with winter and Tommy continues to progress slowly but surely. He still goes to physical therapy three times a week, where he rides the stationary bike, walks back and forth along the "kitchen counter" and walks with his walker with Jenna at his side. On sunny days we spend a lot of time on the back porch, where Tommy watches the ugly houses go up across the creek with his binoculars or snoozes on the couch. On Monday, he saw Dr. Raj, who said that Tommy's lab work from last week shows continuing improvement except for a spike in his liver enzymes. This appears to be a result of one of the drugs Tommy has been taking (Gemfibrozil), so Dr. Raj discontinued that drug and Tommy will have some more blood drawn next week to see if there is an improvement. If not, Dr. Raj will send him to a specialist. For the first time, Tommy was able to step up onto the scales, with help from the nurse and myself, and he now weighs 156 (his weight was more than 200 when he had the stroke). Dr. Raj says that is a good weight for him. I knew that Tommy had lost weight, but when I'm getting clothes for him I still have to remind myself that he no longer wears size XXL shirts!

Sunday, March 22

Overall, Tommy continues to improve, although he was unusually tired this week--why, I don't know. He is still going to physical therapy three times a week, and he didn't do any walking this week, which is a definite slowdown from the progress he has been making in previous weeks. Hopefully, this week he'll be up to speed again. The weather is turning to spring, and several times over the past couple of weeks we have gone to the boardwalk at Bethany Beach, where I usually walk a mile and a half while pushing him ahead of me. But today, Tommy spent most of the day snoozing on the back porch.

Saturday, March 7

My blog entries are not as frequent, and that's because everything is going well. Last week, Gaie came to visit during spring break at Eastern Michigan University, where she teaches nursing. Her visits are always wonderful; she teaches me so much about how I can help Tommy better (plus the end-of-winter sales at the Rehoboth outlets are under way).
Last week, Tommy "graduated" from Beebe's outpatient occupational therapy with Jennifer, because she says that he has met her goals for him. They include dressing himself (top half), grooming and other basics of everyday living. Jennifer is a terrific therapist and helped Tommy a lot in learning those tasks. Tommy continues to go three times a week to physical therapy, where he spends a lot of time walking with the walker (under the supervision of either Tim or Jenna). He is getting stronger and, two days ago, with me assisting, he walked with the walker from the dining-room table out to a chair on the back porch to sit in the sun. We go out for errands together every afternoon, and we sometimes go up to the Bethany Beach boardwalk for an ocean fix.
A couple of days ago, we called Tommy's daughter, Karen, to wish her a happy birthday, and Tommy had a long conversation with her about boats and engines, an interest they share. Talking on the phone is a really good thing for Tommy, and he enjoys his frequent phone calls with his kids, sisters and friends. If you haven't called him lately, please give a call one of these days around dinner time (302-539-8079). Promise: If you call him, we'll make the next call back to you!
On the last Thursday in February, we attended the first meeting of a newly formed stroke-survivor support group, which was organized by Beebe speech pathologist Holly Sullivan and held at the Tunnell Center, up near the Rehoboth outlets. Mary and Al were there, as were a dozen or so other stroke survivors and their caregivers. It was a good meeting, with everyone getting to know each other. When Holly asked everyone to tell the group what their hobby is, people said things like gardening, reading, taking care of their dogs...until it came around to Tommy, who said "sex." Oh, Mr. Long--behave!

Tuesday, February 17, 2009

Jack and his friend Danny came for a couple of days to see Tommy, and of course Tommy was delighted to see his old pal. This morning, Jack prepared one of his legendary breakfasts--smoked bacon from the Family Butcher Shop, fried potatoes and onions, eggs over easy, toast--the works. It was a definite departure from the more austere diet that Tommy and I have been following, but what the hey. Jack promised that when he comes back this summer for some fishing, he'll make his pancake and sausage breakfast; if we stay with oatmeal until then, we should be okay for another splurge. Meanwhile, Tommy continues slow and steady progress at outpatient therapy. Yesterday, at the end of his physical-therapy session with Jenna, he walked out to the car for the first time using his walker and with Jenna and aide David at his sides. Big achievement.

Thursday, February 5, 2009

Yesterday Tommy was feeling a little stronger, thank goodness. I took him to see Dr. Raj, who said that he shows no signs of a significant downturn and that it's normal, after his two-day interlude at the hospital, for him to be tired for a few days afterward. My fingers are crossed that this is the case. Lovely morning here--we're socked in with real snow, a rare treat. I couldn't get the sliding door to the dog run open this morning because it was frozen shut. It's sunny and the fluffy snow is being blown in little whirlwinds, a lovely sight. Tommy will resume his outpatient therapy tomorrow (I'm not sure I would have been able to get him there today anyway), so this will be an at-home day. On the menu: homemade applesauce and lentil soup.

Tuesday, February 3, 2009

I got Tommy home and to bed late Saturday night. He will see Dr. Raj tomorrow--the doctor wants to see him before allowing him to resume physical and occupational therapy. That's a good thing, because the hospital visit seems to have sapped him of momentum and strength. I am hoping that's all it is--one step back due to all the rigamarole. Yesterday Tommy's longtime friend and boating buddy Frank came over to visit, and Tommy barely said two words. A rough patch.

Saturday, January 31, 2009

Yesterday was a very difficult day, but it looks like things are working out. It all started when Tommy was at rehab and I was down the street grocery shopping. One of the therapists called me on my cell phone and said they thought Tommy might be having a stroke; he had complained of pain, seemed weak on his left side, and wasn't speaking. The next thing I knew I was following the ambulance up the ocean highway to Beebe hospital in Lewes, talking with my sister on my cell phone for moral support. But although the hospital has kept Tommy overnight, the doctors think he's okay. What a day, sitting with him in a little emergency-room cubicle for nine hours. Thank goodness it was pretty apparent to me within a short time of arriving there that, whatever had happened, he seemed basically okay--he was talking to me and was responding appropriately (although he did tell the neurologist that he's 53 and left-handed...). The results of the CAT scan and MRI that he was given during the afternoon showed no sign of new damage. This morning, he will be given another CAT scan and MRI, and if the results are the same he will come home later in the day.

Wednesday, January 28

Something weird happened around the time of the tooth-fragment-that-didn't-get-pulled fiasco in December; life at Lazy Lagoon seems to have gone into warp speed. Now it's almost the end of January and somehow I'm still turning the corner into the new year. Tommy continues to go to therapy at Millville rehab--three times a week for two hours. He is improving slowly but surely--more overall strength, better appetite, same salty sense of humor. On Sunday, Tommy's sister Elaine and her hubby Alan visited, and we had a nice, low-key afternoon of reminiscing and comparing notes about Medicare hassles. Although Tommy listened to the conversation, he didn't have a lot to say (my theory is that he clams up when he's confused, which happens fairly often but doesn't last too long).
Meanwhile, there's been a huge change in the way we eat. Since Tommy's stroke, he has been on a low-sodium, low-fat, low-sugar diet, and since he came home in November we have both been eating that way. In order to give him this diet, I began reading the FDA-mandated labels on all packaged or processed food at the grocery store and was floored by how much sodium, fat, and sugar all the "foods" contained. My first question was: What is this "high fructose corn syrup" and why is it the main ingredient in so many foods of other names (answer: it's cheap unhealthy filler, aka junk). As a result, we now eat what I will call "scratch" foods--almost nothing from the cans and boxes that fill those middle aisles of the store--and instead of sugar Tommy gets Splenda and I get Stevia (an herb derivative that Tommy finds bitter). The result is that Tommy's blood sugar has improved so much that he no longer needs to take medication for Type II diabetes (he was diagnosed as "borderline Type II last spring, a couple of months before his stroke). Of course, it surely must also help that he no longer drinks beer. His drink of choice, believe it or not, is now perhaps the healthiest beverage a person can drink: Decaffeinated green tea. Go figure. As for the sodium dilemma, I have discovered that a seasoning called Spike (the non-sodium mix) is great as a substitute for salt. I showed Tommy a photo of the two of us from two years ago, and we both looked like a couple on the road to trouble--fat 'n saggy. So, in many ways, we are healthier now than we were back then.

Sunday, January 18, 2009

Yesterday, we made our first "social visit." We went to see Mary and Al, up in Harbeson, a forty-minute drive (very long for us). Al had a stroke a month after Tommy did, and we got to be good friends at Ren rehab, where we'd often be a foursome for dinner. At first, Al couldn't talk other than saying "No no no", which he did often and loudly; and--as he got better--he started to make short mumbling sounds that sounded like "Rr rr rr" to Mary and me. What's funny is that Al and Tommy both have great senses of humor, and when Al would say something funny, Al and Tommy would look across the table at each other and laugh out loud--something neither had done since their strokes. I will never forget the evening that Mary, for the first time, understood what Al was saying. She and I had been talking about the presidential race (we were on different sides), and Al looked across at Tommy and, with a big smile, said "Rr rr rr"; and the two laughed. Mary turned to Al and said, "You just said we sure talk a lot, didn't you?!" He nodded yes, with great big nods, and we all had a good laugh.

Thursday, January 8

Tommy is now officially enrolled in what I'll call Millville rehab. A well-staffed and -equipped storefront gym, it's a branch of Beebe hospital in Lewes, which is about 45 minutes away. (Millville rehab has some sort of proper name, but the names that these health-care facilities have are almost never descriptive and almost always forgettable.) Thankfully, Millville is Sussex County's closest town to us, and Millville rehab is only about five minutes away in the small shopping center next to the Food Lion.
Yesterday morning, Tommy was registered by David, the therapy aide, and then evaluated by Jennifer, the occupational therapist, and Tim, the physical therapist (this is Tommy's second physical therapist named Tim; it was Tim at Ren rehab who got him walking in the hallways). Tommy was responsive but tired. He went through a series of interesting tests with Jennifer that involved squeezing and grasping various precision instruments that looked like something a surveyor would use. Toward the end of the two hours, he walked the length of the compact gym with his walker (he's still a mid-assist, which means he walked with Tim assisting and David following with the wheelchair). Today, he has an OT session, tomorrow a PT session, and then for several weeks we'll go there three times a week.

Wednesday, January 7, 2009

It's 2009? You're kidding. Where did Christmas go? Yes, Matilda, the second half of 2008 is kind of a blur. Let's review: Tommy had his stroke in June; then he was a week in the hospital; then he spent a month at an acute rehab center an hour's drive north (where I stayed all day every day and often overnight while our friend Irv ran and fed the dogs for us); then he had three months in a rehab place a half-hour drive north of here, where I went every day; and then he came home at the beginning of November and we had home therapists every day for several hours (during which time Steve and Jill took our rambunctious dog Sandy under their wings); and then he had his teeth pulled (except for a fragment that gave him trouble right up until Christmas); and now, today, Tommy begins outpatient therapy at a facility only five minutes away. Whew--what a long haul. We have had a lot of family and friends come to visit, and Tommy continues to receive phone calls and cards, so we've had a lot of support. A "big party" for us these days is what we did the other evening--our friends Patti and Irv came over for dinner and a movie, and the main course was a venison tenderloin that Irv brought back from his autumn hunting trip to West Virginia. We were in bed by 9 p.m. '-)
Yesterday was a typical day for us. Tommy spent eight nonstop minutes (a new record) pedaling the cycle exerciser, and he also did a number of other exercises with his legs and arms that are based on the t'ai chi form that I practice. He walked the length of the living room using the walker, with me assisting. He is still on a "mechanical soft" diet, so anything I cook for him gets a quick run through the mini-Cuisinart that Patti gave me for Christmas (thanks, Patti!). As soon as Tommy's new schedule is set up with the Beebe outpatient folks, I will schedule him for a visit to Dr. James, the dentist who will fit him for new teeth. As for me, my heart is still stuck at Thanksgiving, my new favorite holiday. And the Christmas cards I send every year? Hah! I do believe this is the year that I will send Chinese new year cards.