Giving Thanks

Sorry it's been so long since I updated this site. I was stuck with no progress in my knee for three weeks and was discouraged, to say the least.

I still have pain in the knee. It never goes away, but it is low-grade most of the time. Occasionally, especially after standing for a long time, it is severe enough that it keeps me from doing much of anything and makes even lying down difficult. I've been taking three Norco (Hydrocodone/Acetaminophen) a day for seven weeks. Stopped taking Oxycontin on Sept. 27 and took four Norco a day for a week, than switched to three. Tried cutting down to two for a couple of days last week, but that didn't work! I do NOT like taking this stuff. I see the surgeon on Dec. 3 and shall see what he says about it.

I go every Tuesday morning for Physical Therapy. There is a group of us, all with total knee replacements, but the PT works with each of us individually. (The PT I mentioned in my last update was John, from Home Health Care. Now I've graduated to going in to the Kaiser "gym.") I like Nancy, the PT, very much. I had worked with her a couple of years ago. It was good to see a familiar face and to have someone who knew me a little. She measures the bend in my knee and also how straight it can get. The goal is 120 degrees [I HATE the keyboard on computers. Where is the degree sign? Where is the pound, English money, sign? My ancient Olivetti portable had both!] for the bend, although much more realistic is 110. Nancy says the doctors stop measuring at 110. The goal on the straight leg is 0 degrees. I had been stuck on 104 and 11. Last Tuesday I made it to 107 and 7. Hurrah! Nancy works with my knee each time and says it feels to her that there is room for improvement still. My arthritis kicks in every morning, especially as the weather gets colder and damper. It takes a few hours for the joints to warm up and do their best. But, I can usually walk up and down stairs normally; my gait is close to normal and I can walk almost as fast as I could a couple of years ago; I can sit at the computer or in a meeting or whatever without much pain although I can't keep my right knee totally bent for long. (I've had to have an aisle seat in theaters and airplanes for my right leg for about 15 years, so this is nothing new.)

I'm afraid to say it, but it does look as if the spine surgery in January was a total success. I have lower back pain from arthritis almost all the time, but it's certainly no worse than it was a few years ago and it may be a little better. I've had this since 1971 so I'm used to it! There is, however, NO nerve pain! What a miracle!

When I think back to all the days in the last year or two when I could barely walk from living room to kitchen, when a block was more than I could manage without stopping and screaming, when I had to cancel almost all activities, when pain dominated and controlled my life, I am overwhelmed with gratitude.

Had my fourth bone density scan done a couple of weeks ago. I've lost a little density since the last one in May, 2004, but the readings are still excellent. T-scores compare the density to that of a young normal woman. Osteopenia is defined as a T-score of - 1.1 to -2.4; osteoporosis is defined as a T-score of less than -2.5. My T-scores are +1.5 (lumbar) and +0.5 (hip). This is wonderful for someone as klutzy as I am! I have fallen many times and never broken anything.

So today I have much to be grateful for. Not only am I alive, having survived two surgeries, but I can, for the most part, live the life I want. My food plan is troublesome and certainly restricts some traveling and makes spontaneous outings difficult if not impossible, but I'd rather have these restrictions than have to take medication. My diabetes continues to be under control just through diet. Thirteen years ago my blood pressure was very high and I was put on meds. Soon after I started the food plan, I went off the meds. Now my blood pressure is excellent.

I give thanks for all my friends. I could not have done the surgeries without them. They drove me, cooked for me, delivered food to the hospital (I had to take ALL my own food; the hospital could provide nothing that was on my food plan), phoned me, visited me, did my dishes, sat nearby while I showered and then dried my feet, ran errands (drugs! prune juice!), and provided encouragement and support and sympathy. Amazing.

And, of course, I give thanks for Achates and Creusa. One could not find two more beautiful and loving dogs. I am grateful that fate led to me greyhounds. I am grateful for the friends I've made in the greyhound group. And I am so full of love for my hounds that sometimes I think I could just burst.

This message is a bit long! Congratulations to those of you who made it to the end. I give thanks to you all for staying in touch, for providing support and encouragement, for caring.

Much love to you,
Janet

On the Road Again

There is much that still is not right, but I think I'm really on the road to recovery now. Beginning to feel somewhat human at least part of the time!

I've been driving a little for a week. Have taken the dogs to an unused (for most of the year) corral in Marin for a greyhound play date last Sunday and today. The driving isn't too difficult, but once I'm home my knee starts screaming and I pay the price with pain that neither the Norco nor ice really gets rid of. It's worth it, but it does mean that I can't do anything else in a 24 hour period.

Last night I went to the ballet. A wonderful friend drove, and the theatre has lots of leg room so circumstances were as good as possible. My knee definitely hurt, but it wasn't awful until the ride home. I took the advice of my PT and brought an ice pack with me and asked the woman at the refreshment stand if she could put it in a freezer. No freezer, but she did bury it in ice. I got it at the intermission and sat on a bench with my pants leg pulled up and the ice on my knee! Not very classy, but it helped me get through the performance being able to concentrate on the dancing.

I'm going to give up my symphony ticket for next Friday. Can't manage BART and walking and sitting. I'll go to another ballet on Saturday, though. It's in Oakland and a friend will drive and we have seats with lots of leg room.

The surgeon and PT are concerned that I still have so much pain and swelling and so little flexibility, but I am improving, if not daily then certainly weekly. I can walk up the stairs fairly well. I can walk without the walker a bit although I have to concentrate on moving "normally" and not favoring the right leg.

The worst aspect is the lack of energy and the dizziness and nausea. I'm trying to take as few pain pills as possible. Every little activity wears me out. But, again, I'm improving bit by bit. Now I need to push myself more and not use the yucky feeling as an excuse to be totally lazy. Since I'm a slug by nature, this is a challenge! I'm so grateful for the hounds who rouse me occasionally but love me even when (especially when?) I'm lying on the couch and for all the friends who have done so much for me.

Love to all of you who are reading this,
Janet

Hounds Are Home!

Life is looking better. It was a beautiful morning. What little I could see of SF and the Bay was all sparkling and clear. Warm sun and nice breeze. (Amazing how it's a breeze when I'm home in the sun but it's a raging wind when I'm getting out of the pool!) I'm able to sit a few minutes longer now although not even for half an hour. It's not so hard to get up. Walking around is painful, but not nearly as bad as it was. My knee is less flexible than it was a week or two ago so which is worrisome. The two worst things are having to continue the pain meds and thus being somewhat dizzy and nauseous much of the time and having almost no energy. Did feel pretty good this morning, but just doing some dishes, reading a few emails, and writing a couple of checks wiped me out. When I take a shower I have to plan to do nothing else for at least half a day. Progress is incredibly slow, but it is progress.

Most importantly, my beloved hounds are home. They were delivered to me late this morning. They're not setting a very good example, since all they've done is sack out on their pillows and sleep! It's wonderful to have them here.

Don't know when this will be posted since the person in charge of the site may be away from her computer for a few days, but wanted to get a message off while I was in a decent mood.

Janet

Some Relief

Home Health Care Nurse came back yesterday. Three enemas later, I got some relief and have decided that I may live after all. I was totally exhausted and did virtually nothing all day. Have a little bit of energy today although not much. My knee has regressed with the days of inactivity, but I'm hoping we can romp (!) through the rest of the time. Am disappointed that I cannot manage without the pain pills.

Love and thanks to all of you who have sent cards and emails. Sitting at a table or computer is extremely painful, so you'll have to wait for individual thanks. But I think of you all the time. Absolutely could not have made it without friends near and far.

Janet

Warning: Not for the Delicate!

If it's not one thing, then it's another...

I've been having a miserable time with impacted bowels. This was the problem last weekend when I lost almost two days. It's a first for me, and I had no idea it was so painful and so debilitating. All I could do was doze and moan. Thought things were resolved Sunday afternoon (thus Sarah's optimistic message), but the ib returned Tuesday. Yesterday I could do nothing and this morning I felt so awful that I cancelled cleaning people and the friend who was going to come to help me prepare for the cleaners. Got a prescription for Lactulose which a friend picked up and delivered late yesterday afternoon. It seems to have stirred some rumbling, but the impacted stool is still there. Home Health Care Nurse is due soon to unimpact. After that I hope I'll be able to get back to thinking about my knee and doing my exercises.

The knee is definitely getting better, but at a MUCH slower rate than I had imagined. Doing anything with my leg down is painful, and I can manage for only a minute or two at a time. This includes walking, standing, and sitting in a regular chair. Thus I've done almost nothing on the computer. It will take me 2 or 3 sessions just to get this message out. The new medicine protocol (Oxycodon every 12 hours, Norco every 4 hours as needed) I started over a week ago has kept the pain at a bearable level although the side effects (see above) make me wonder if it's worth it. I'm trying not to use more than is really necessary.

My behind and the backs of my thighs were covered with raw, oozing, itchy patches when I came home from the hospital. Had lots of blisters and raw spots on the front of my legs, especially the right one, as well. These are healing, but still itch. The incision (8-9" long) is healing nicely although it too itches. John, the lovely Home Health Care Physical Therapist, took out the staples over a week ago.

I miss Achates and Creusa terribly. They were originally supposed to come home over a week ago. Now I don't know when it will be. A lovely friend had volunteered her time and her Honda CRV to take us to a greyhound play date this Saturday and to the big (over 300 humans and 100 hounds) Golden State Greyhound Adoption picnic Sunday. I don't see how I can manage either one. I'm really disappointed.

P.S. Nurse just left. Still impacted. Not very happy. Sorry about all the gory details.

Janet

Better Belated Than Never

I got to spend some time with Janet on Sunday afternoon, and wanted to give everyone a short update. She was having a pretty thin time of it on Saturday, feeling utterly miserable. However, by Sunday, she was feeling much better. I suppose that's the nature of recovery, whether physical, emotional or spiritual: you have good days and bad days, and it's not a predictable or linear process.

She has this really cool machine that helps her stretch her knee. It's called a "CPM", for Continuous Passive Motion, and it can be set via an electronic keypad to bend her knee to a precise angle. Her range of motion has improved considerably since she started using it.

In other news, she's hoping she'll be up to having the dogs come home in a few days. It was quite odd to be at her house without the dogs there -- they are much missed!

- Sarah

Pain and Misery

Very short message. Sitting in a chair is the worst thing I can do. Pain is excruciating. Progress is minimal. Swelling of foot and calf has gone down some, but knee and thigh are twice the regular size. No position, no matter how much Endocet is even remotely pain-free.

It's so hard and painful for me to do anything that I've cancelled the coming-home on Monday of the hounds. So now I'm miserable and so lonely on top of being in agony.

Bitch and moan. Thank god for incredible friends who are coming by and watering, washing dishes, helping me with the exercise that needs a second person, and just generally saving my life.

More later, I hope in a more pleasant mood!

Janet

First Days of Recovery

Hi, everyone -- I just spent two nights with Janet, sharing U.S. Open and remarkably few moans and groans, though it's obvious the pain is pretty fierce when the percodan wears off.

Our tough customer seems happily willing to ignore doctor's (& nurses') orders, if they seem outrageous or contradictory (both happen), but is being faithful about the real basics -- doing the exercises and getting up and about. In fact, it was hard to get her to let me do things for her! This can change, depending on where she is in the pain cycle, of course.

Impressive as always were the tremendous organization and planning that went into this venture, and the list of wonderful friends who are rallying around. It's great to be able to help.

Most worrisome is the coming advent of the dogs -- Janet let slip to the Home Health nurse that she planned to ride along to pick them up. The nurse was alarmed, explaining that MediCare (?) won't cover homehealth unless the patient is truly homebound -- that means, no going out except for doctor's appointments and hairdresser! (and one other I don't remember.) Somehow, I love that last allowance -- beauty knows no restraints!

We were glad to discover that Rescue Cream (a Bach Flower remedy available at Health Food stores) relieves the itching and rashes and potential bedsores from lying in bed, and from the splint. Other challenges are being met and overcome as I write, I'm sure -- There's no keeping our brave girl down!

best to all,
Catharine Lucas

Upright

Janet is home, walking around some (amazing but true), but tires easily. So it's back to the slings and arrows of regular life, what with internet service disruption and so forth. Still, it's good to be home.
- Sarah

Homeward Bound

Just got off the phone with Janet. She's very excited to be going home in a little while. She reports that she was able to stand up and brush her teeth this morning -- huzzah! It's the little things that matter most, innit?

Side note: As webmaven, I need to offer my apologies for the dilatory posting of updates. Sorry if I caused anyone to worry!
- Sarah

Sunday Evening Bonus Update

I spoke to Janet on the phone this evening (Sun.). She sounded great, optimistic, almost happy. She's glad to be going home tomorrow and enjoyed visits today from Sarah and Louis and Elisa.

If anyone knows a store that's currently carrying frozen butternut squash, please post it. I will make her the squash-pear soup she likes if I can come up with the squash. Trader Joe's and Berkeley Bowl, my usual sources, don't have any now.

-- Pat Luchak

Sunday Update

I stopped at the hospital to see Janet today, and deliver some food. She believes she will be able to leave for home on Mondy; although the pain is still quite intense, and she is getting lots of medication, her progress from the day before has been significant, and she was able to get up with just a little help today. She gave me permission to let you all know that any and all help will be appreciated in the coming time of recuperation. Give her a call [my suggestion] and check for messages that might call you in.

-- Joanne Howell

Saturday Update

Janet is looking good although in more pain than she anticipated. Two friends were visiting when I arrived with her pre-packed and frozen dinner. Still planning on going home Monday. The PT and the doc seem to think it will work! She was drifting to sleep as I left — healing takes a lot of energy....

Leslie

Resting (Un)comfortably

Janet is in room 730 at Kaiser Oakland -- a private room, huzzah! She is pretty doped up at the moment but did say that she "had a bumpy ride down to x-ray." She was too groggy to think of anything else to report, but she did want me to say thanks to everyone for all the prayers that went out for her this morning.
- Sarah

Flying Colors

Dr. Yang called me at 11:00am and said that the surgery was "smooth" and "perfect." I'm off to Kaiser now to deliver Janet's food and overnight bag.
- Sarah

Once Again to the Knife

Keep meaning to do an update but keep thinking I'll wait until one more appointment, one more hurdle, one more something has passed.

Knee replacement surgery (for my right knee) is scheduled for 8:00am on Friday, 31 August. Supposedly I'll go home on Monday, Labor Day. I'm getting nervous, both about the surgery (especially bone infection) and the recovery ("arduous" and long, according to friends). The knee surgeon has not been as thorough or forthcoming or reassuring as the spine surgeon was.

There seem to be a zillion things to do and plan for in advance. Living alone has certainly been my choice and my preference, but there are times when it makes life more difficult! I'm imposing on a lot of friends, many of whom already proved their friendship and put in their time with the January surgery.

Last Friday I met with the nurse manager for the floor where I'll be in the hospital. My main concern was to make sure that I could bring all my own food and have it stored and heated when necessary. She was very supportive and helpful. The dietician was there also. We agreed that she could supply water! I can use one of the four large refrigerators cum freezing compartments for my food, and the nurses supposedly will heat anything I need in their microwaves. I do have to have someone bring the food each day, which means I have to get it all prepared and take coolers to three different friends. They'll store the food and ice packets in their freezers until their appointed day. I was pleased to meet the nurse manager and to see the ward. It was not as bad as I had expected! I did this at the hospital (a different one) before my spine surgery and felt that it made a big difference.

The hounds will go to a lovely home in Pacifica (gorgeous ocean view!) to stay with a very nice and organized woman and her two greyhounds. My wonderful guys who had the Greyhound Boarding and Retirement Kamp, where my dogs had stayed ever since I first got Achates, have moved to Indiana. Not very convenient! They recommended this woman. We went to meet her a couple of weeks ago, and I feel very comfortable that my loves will be happy there. I'll take them on the 30th and pick them up on September 10th. A wonderful friend will drive me in my car. This will get the car a needed outing as well. Probably the hardest thing about the recovery is not being able to drive. They say 6-8 weeks; I'm hoping for 4, but trying not to be too impatient (ha!). Well, it may not be the hardest. I understand that there's a lot of pain and a lot of difficulty walking and a lot of essential exercising. No lying in bed and playing the invalid! "Everyone" says the results are worth it though.

The next entries will not be written by me. Sarah, who set up this site and does all the posting, will be at the hospital when I come up to the ward, and she'll write the first update. Other friends will call or email info to her for the following week or so.

Thanks for reading this and for your support and concern. Please think good thoughts for me!

Janet

Cautious Optimism

Had a cortisone injection in my right knee two weeks ago Monday. It did provide some much-needed relief, although only about half of what the previous injections (last Nov and Jan 30) had done. I immediately returned to deep water aerobics and enjoyed two days of lovely warm weather before our normal summer morning cold, fog, and wind returned.

[If any of you do not know about deep water aerobics, it is a marvelous invention. Everyone wears a flotation device, either a belt or ankle cuffs, so that one can "stand" upright in deep water without touching bottom. This is NO-impact aerobics! Pushing against the water gives a good workout. We use aqua barbells, made of foam, that provide extra resistance. We do arm and leg exercises simultaneously, moving straight legs back and forth or sideways or doing a jogging or bicycling motion, whilst doing curls or pushing arms out or down in front, in back, or at the sides. Then we lie back and do crunches. In all of this, feet do not make contact with the bottom. Aside from freezing when I get out in the cold and wind, I love it! The class goes year-round in spite of being outside.]

The best thing is that I've been able to walk normally. Still have to go down stairs one step at a time, but I can go up some stairs. The injection does seem to be wearing off some already, and I felt a little pain in my knee when I was at the dog park this morning. I'm hoping that the cortisone will last enough so that I can exercise for two more months, but I'm worried that it won't.

KNEE REPLACEMENT SURGERY IS SCHEDULED FOR FRIDAY, 31 AUGUST. I don't know why the surgeon only does replacements on Fridays since one has to stay in the hospital for three days, and weekends are not the best time to be in the hospital! This particular weekend may be a total disaster since it's Labor Day Weekend. But that was the first available date. I had hoped for July! Oh well, time to practice acceptance!

The spine surgeon was supposed to call me Wednesday; it was postponed until Friday; then it was postponed until Monday, July 9th. He's doing lots of emergency operating. Maybe it's a good thing. I really think the nerve pain is improving. It seemed to lessen once I was walking better after the knee injection. It certainly isn't gone, and so, of course, I fret and stew, but I am, indeed, cautiously optimistic. I've been totally off Percocet for over two weeks and was on only half a pill a day for over a week before that; I think it must be completely out of my system by now. I never felt any kind of a "buzz" when I took it and noticed no withdrawal symptoms coming off, maybe because I did it so gradually. It's great not to take it and not to have to take the stool softener! It never helped the arthritis pain in my knee or back, just the nerve pain, so there's no point taking it now.

I probably won't do another update until sometime in August when I'll be reaching out to friends to help after the knee replacement. Hope you all have a great July! Thanks for checking in at this site.

Creusa (June 1st) and Achates (June 16th) both turned six this month. Creusa is already very grey and Achates is getting there, but they are both healthy and active and silly and willing to run for 30 seconds or so every day. Hard to believe I've had Achates for three and a half years. In some ways it seems as if he's been with me forever, in other ways it seems as if he arrived only yesterday. I do love them so much!

Love you, too,
Janet

Frustration

Yarrrggghhh! It's been eight weeks since I started the Synvisc injections, five weeks since the last one. I didn't find out until after the third injection that it would be "a few weeks" until it took effect. Well, it seems clear now that it is NOT going to bring me any relief. I'm angry. I think if I had known before I started that it would be two months, I wouldn't have tried and just would have have a cortisone shot instead. I feel that I've wasted the last two months. I've been able to do almost nothing. Most walking (such as from BART to symphony or ballet, or shopping unless I can quickly and easily get to a cart to lean on) has been with my walker. I've had to give up my deep water aerobics and am amazed at the amount of flab and lack of muscle in such a short time.

So, on Monday I'm going to get a cortisone shot. Then I'll meet with the knee surgeon the following Tuesday (the 19th) and probably set a date for knee replacement surgery. I had been ready to do this seven months ago when my back got so bad that it was obvious that surgery came first. I'm not looking forward to more surgery, but I am looking forward to being able to walk and put on socks!

It is possible that there is good news about the back surgery. I took my last Percocet (half a pill) Tuesday morning. I do have nerve pain in my hip and down my leg, but it is not unbearable. I'm reluctant to be too optimistic until I'm sure all the Perc is out of my system and until I do some real walking. Am assuming that the cortisone shot will work for a few weeks and that I'll be able to go back to the pool, take longer walks with the dogs, and do some other exercises. I want to get the muscles as strong as possible before the surgery in order to hasten the recovery process. If my nerve pain does not get any worse after a few weeks of exercising, then there is actually a chance it will get better eventually. I have a phone appointment with the spine surgeon on the 20th. I would like to get an MRI to see if there is any bone growth or whatever that is causing the pain and might get worse.

And, yes, my regular back arthritis has been very bad recently. Hope it's not so bad that I won't be able to do the exercising and walking.

I'm sad today. I was planning to go to Swarthmore this weekend for my class's mini-reunion, but I cancelled a few weeks ago. I really wanted to be there for many reasons.

Haven't been able to sleep lying down since the surgery, so finally broke down and ordered a very expensive adjustable bed with a very expensive mattress from European Sleep Works. (And to top it all off, they don't have a full bed, which is the largest my bedroom will hold, and the twin is extra-long. This means buying all new bed linen that is hard to find. The twin XL seems to be either cheap and awful for dorm beds or outrageously expensive with no choice of color. More frustration!) They can't deliver until July 10th, so I'm stuck on the couch until then.

Just think, if I have the knee replacement, you can go through another whole surgery with me!

Love,
Janet

Knee, Tooth, Spine, Pain & Lethargy

Knee: The cortisone shot in my right knee, which wonderful Dr. Gorek (spine surgeon) administered when I was unconscious for the surgery, wore off some time ago. Basically I can't bend my knee past a 90 degree angle and can do that only for a few seconds at a time. Can't bend the knee sideways much at all. Walking is painful. Going up and down stairs is very difficult; can go only one step at a time. Putting on socks and shoes takes time, effort, and lots of grimacing. Sitting in a regular chair (such as at the symphony) does not work unless I can stretch my leg out straight. I tried to put off doing anything about it for a number of reasons, but finally gave up and saw the knee surgeon on Tuesday, 24 April. We decided to try Synvisc injections even though there's only a slim chance that they'll work. I've had two and shall have the third and final on Monday. So far there's been no relief, but it's still possible there will be some after all the injections. I'm just trying to buy time until my back is okay and I can have a knee replacement.

Tooth: Minor in comparison with everything else! Tuesday when chewing meat off a chicken bone, a piece of a lower tooth chipped off. I adore my dentist, and he's marvelous. Called him Wednesday morning just before I left for my appointment with Dr. Gorek and went to see him afterwards. I was lucky that only the top part of the inside wall of the tooth broke. Dr. Oldenbourg ground it even, cleaned it out, and put on this new bonding material. It's a miracle substance. Dr. O already had used it once on an upper back tooth where the gum had receded and the semi-exposed nerve was giving me a lot of pain. The material is white (off-white) and hardens instantly once it's zapped. Entire procedure took about 15 minutes and required no novocain!

Spine: Saw Dr. Gorek on Wednesday. He was going to order X-rays but didn't since I had a couple of my back taken the beginning of April. (See blog entry for 11 April.) They showed the spine but not the opening on the side of the spine where the nerves go out. Spinal canal looks clear and good. Dr. G. is "very encouraged" and thinks that the pain is gone or going. He says that if there were anything really awful, the "small" amount of Percocet I'm taking now would not keep the pain away. (He says some of his patients take 10 a day plus other stuff!) I'm not as optimistic as he is because I think I feel some pain in the hip, at the sacroiliac joint where the sciatic nerve goes through. (Those of you who know anatomy please forgive my errors. I really don't know what I'm talking about. But there's a spot on the right side of my lower back/hip where the pain was most intense, and then pain would radiate from there down my leg.) Anyway, he agreed that I should try to go off the Percocet and see what happens. A week before I saw him I went from 3 to 2 a day. He suggested that I cut the pills in half and take a half 4 times a day for a while, then 3 times a day for a week or so, then 2, then 1, then none. So today I'm trying the 3 halves. Please send all the good vibes you can spare that the pain does not return as the Percocet wears off! It would be wonderful if I do not have to have another spinal surgery, which would include a fusion, and could go right to having the knee replacement.

Meanwhile: My knee hurts. My "regular" arthritis across my lower back hurts. These pains affect everything I do (or prevent me from doing things). I've been depressed. I've felt whoozy and nauseous almost daily although not all day. (This is one big reason for wanting to stop the Percocet. I don't know that it's the culprit, but it certainly seems possible.) Doing just one thing a day wears me out and I collapse for the rest of the day. Can't really explain this lack of energy. I can't sleep well in my bed in spite of numerous pillows so spend all or most of every night on the couch. Have it set up somewhat like a bed, but I still feel grubby in the morning. Better than not sleeping and having so much pain I can hardly get up when I try the bed. I do wake up every hour or so on the couch but usually can fall asleep again before too much time goes by. I gave up my symphony ticket last Saturday and did not go to hear Ian Tyson on Sunday. Just couldn't manage anything after being out (some walking, lots of standing) in the sun for over an hour both mornings at Greyhound Play Dates. I made reservations to go to Swarthmore for my class's mini-reunion (47th) in June, but I doubt that I'll make it. A lot of miracles will have to take place in the next couple of weeks for me to be able to handle the plane flight and a dorm bed! I'll wait as long as I can to cancel and not worry about losing the money.

If you're still reading this, thank you!!! Would not be able to handle all this were it not for such good friends and my incredibly beautiful, soft, sweet, silly, amazing, wonderful greyts. Love to you all,
Janet

Born to Hobble

I've been meaning to write an interim update for some time.

I think the sciatic pain is still there. I'm taking 3 Percocet daily, and it takes care of that pain although not my regular back and knee arthritis. I need to ask the spine surgeon if I should go off the Perc a week or so before our next appointment (May 2nd) to see how bad the pain is. I don't think it's disappeared, but I'm not positive.

The cortisone shot in my right knee has worn off, so once again putting on pants and socks, to say nothing of walking, is a challenge.

Almost three weeks ago, whilst walking through my house and changing directions, I pulled a quadriceps muscle in the front of my thigh. It hurt so much that I screamed! Could not walk a step without support. Thank goodness for my walker. I got it a year or so ago when my back pain was so awful but usually don't use it now. I needed it just to go from one room to another. Put my food on the seat to get it from kitchen to dining room.

The quad pull did get better and by last Thursday it was almost healed. Then Friday morning at the park I was walking toward a friend and talking and not looking at my running dogs. Creusa clipped me from behind (illegal in football!) and I went down splat on my back with my left leg twisted. My ankle was in agony and I could barely drive (disadvantages of having a stick shift and a clutch) but I did make it home with the dogs and called the doctor. Thank goodness for the walker again! Got an urgent care appointment for 11:30 and spent two and a half hours at the hospital waiting for one person or another. They took a bunch of X-rays (ankle, knee, back) and haven't called to say that anything is broken so I assume nothing is. Much to my surprise, my ankle actually did not get worse. I iced it and kept it up the rest of Friday, and by Saturday it was a little better. I have a huge bruise on my knee and leg and ankle (and probably on my back but I can't see it!) and the ankle still is painful but continues to improve, and I can walk and stand almost as well as I could before. My back is very sore but probably not much worse than before the fall. I've had terrible arthritis in the lower back for more than 30 years. No surgery can help that.

It's hard not knowing what's going to happen with the surgery. When I saw the surgeon on March 12th, he said he was sure he had cleared out enough room for the nerves and he thought maybe something new had happened. I can't visualize it, but he said maybe a herniated disk had slipped into the opening. Anyway, he'll do X-rays in May and we'll see.

Meanwhile, I'm trying to plan my life as if everything is going to be fine. Renewed my symphony subscription for next year. Bought tickets for the Prokofiev Festival in June. And I've made reservations to go to Swarthmore for Alumni Weekend (June 7-10) since my class is having a mini-reunion to warm up for our 50th in 2010. (An added incentive, aside from seeing classmates and the gorgeous campus, is that it's Peter Schickele's 50th and he's doing a special concert.) I figure that if I have to have another surgery, it can be done after June.

I don't like taking the Percocet on general principles, but it does not seem to have the side effects I would have expected. I seem to be as aware and alert as I was before. I've been a bit depressed, and that may be partly due to the drug, but at least I don't have the excruciating pain.

Enough. I'll write again after the May 2nd appointment, or before if anything momentous occurs.

Many thanks to all of you who continue to check and to express your concern for me.

Janet

More Waiting

Dr. Gorek, my super surgeon, today said there is still a chance that the pain could go away. The post-surgery numbness of the two outside toes on my left foot going down the foot and up the leg into my behind also may go away. I'm somewhat optimistic about that since it's not as bad as it was 4 weeks ago. He wants to wait 6 more weeks and then do X-rays. Said that as long as the Percocet is working and I'm able to function reasonably well, we shouldn't be aggressive. And he seems to feel that I can take Percocet indefinitely. So I guess I'll continue to do more things and to make plans assuming that everything will be okay. I've gone back to deep water aerobics and am doing a bit more walking with the hounds and a little more exercising. Went to the symphony Saturday. Clothes are uncomfortable on my back but bearable if I wear a camisole or undershirt to protect the incision area. Incision is healing fine and is almost free of scabs, but the whole area continues to itch and not to like hard pressure such as chair backs. Cut is 6-7 inches long and crosses my waist. Am not sure about making travel plans, such as going to PA in June for a "mini-reunion" with my Swarthmore class. It sounds as if surgery, even if he decides I need it, will not be urgent unless the Percocet stops working. I don't like not knowing, and I don't like taking such a strong drug, but I'm glad I don't seem to have any side effects and glad there's still some hope and glad that I can lead an active life for the moment. I'll try to update you all every couple of weeks. Thanks for your continued support!

Not Very Good News

My surgeon returned from vacation today and just called me at 8:15pm. He says the pain appearing in my right leg and hip after two weeks is "very disturbing." There's a chance that it will go away, that it's being caused by the manipulation in the surgery, but it seems more likely that he'll need to go in again and do a fusion. He says to give it two more weeks and call him.

He is writing a prescription for more Percocet. I started taking it Friday afternoon and it's worked well. The pain is certainly much less and quite bearable.

He also said that it was probably okay to try driving but to be careful. If I'm in an accident, there could be legal ramifications from the drug. I feel as if I'm as alert and aware as ever, although that's not saying a great deal! A friend who can drive a stick shift is coming over tomorrow. We'll try to start the car and then take it for a spin on the freeway. If I feel that I'm not functioning properly, Lynne can take over.

Needless to say, I'm despondent.

Lessons Learned

Had the most painful night of my life Wednesday. It was worst in my right leg, bad in my right hip and back. Since I didn't kill myself, I guess it was bearable, but it didn't seem that way. Finally took a Gabapentin (Neurontin) about 1:00 and fell asleep about 2:30. Woke up in a couple of hours in pain. Took the Gabapentin yesterday and last night. Did almost nothing yesterday. Pain almost as bad last night as Wednesday. Got a little sleep but woke at 4:00 in horrendous pain. Gabapentin did absolutely nothing. So I gave in and called doctors. To make a long story short, I now have some Endocet (Percocet; Oxycodone) and shall take my first one as soon as I finish writing this. (I'm afraid it will knock me out or make me too woozy to do anything.)

Lesson 1: Neurontin does absolutely nothing for acute pain. It's for long-term use for chronic pain.

Lesson 2: If one is taking pain meds and one has pain, the solution is NOT to stop taking the pain meds! I had stopped the Vicodin Sunday night because I felt it wasn't doing any good. My guess is that the pain I had the last two nights would not have been as agonizing if I had kept up the Vicodin.

Lesson 3: A three-level decompression (that's what my surgery is called) does not heal in a week or even two. Somehow I had gotten it into my head that if the surgeon did not have to do a fusion my only recovery would be from the incision and that it would last no more than two weeks. Since I have a history of impatience and of wanting what I want today if not yesterday, this has been a hard lesson.

Lesson 4: I am powerless over the rate of my healing and over the success of the surgery.

Meanwhile, any hope I had of driving or doing much of anything is down the tubes. I suppose I should get someone to come and take my car out for a spin on the freeway before the battery dies. Or maybe it's dead already. I haven't even tried to start it. Had hoped my cousin Charlie would be here by now to take care of things like that. It's probably better that he's not here since I'm definitely not good company!

Off to the land of drugs. More later.

No More Pink Cloud

Haven't sent any news recently because I've been too depressed. On Sunday the 11th all was wonderful. I walked by myself to the Natural Foods Grocery Store a few blocks from my house. Took the walker so I could rest the groceries on the seat instead of carrying them, but felt that I could have done the walking fine without it.

On Tuesday the 13th (exactly 2 weeks from the surgery) severe pain in my hip and down my right leg appeared. It seemed similar to the pain I had before surgery, the pain that surgery was supposed to do away with. It's probably from the sciatic nerve. I tried to walk the dogs with a friend; she took Creusa and I took Achates. The dogs had returned on Monday and were still quite exhausted from their running and playing at camp. But I had to cut the walk short and stopped every few yards to try to ease the pain.

Called the surgeon's nurse. She said take more drugs. I tried Motrin; no relief. I tried, at her suggestion, alternating Motin and double-dose Vicodin; no relief. I doubled the Vicodin by itself; no relief. The pain was even worse than before surgery. Before, the pain would go away, or at least go to a manageable level, if I lay down or sat sideways on the couch with my legs up. But now no position helps. Obviously I have not been sleeping well. On Monday the 19th I had to abort another attempt at a walk after a couple of blocks. Finally gave up on both drugs and took my last Vicodin Sunday night. I don't see any difference.

My fear, of course, is that the surgery failed. Called the nurse yesterday and asked to speak to the surgeon. He's out of town for the week, and she said he had no time to talk to me when he got back. [This is the same nurse who has refused to give me a follow-up appointment. I'm supposed to see the surgeon in 6 weeks from surgery. She said she had no openings until April (9-10 weeks) and that the books for April weren't open. I argued in vain on more than one occasion.] Finally after much arguing (her solution: more and/or different drugs) she gave me an appointment to see the Physician's Assistant who had done the rounds at the hospital and had signed my discharge paper. I've just returned from seeing her. I feel a little better in my mind. She said that the pain "could be" from the surgery itself, that it takes a long time for the nerves to settle down. Even more importantly, she said she'd ask the surgeon to call me next week and also to see what he could do about getting me an appointment in a timely fashion.

The nurse and the PA have very different ideas about what I should do. Nurse says do nothing and take drugs. PA says do whatever I want. She says if I want to try different drugs I should go to my regular doctor because she can monitor them better. The main drug the PA says they would recommend is Gabapentin (Neurtontin). I actually have almost 300 of them that my regular doctor prescribed last June when the pain was so bad. Unfortunately, they made me dizzy and nauseous and didn't seem to help the pain at all so I only took 3 of them. I really don't want to take them again. So I may try to tough it out until I hear from the surgeon. Or I may try to talk to my regular doctor, which is not all that easy.

The best thing about not taking the drugs is that I can drive as long as the pain doesn't interfere. Tomorrow I may at least try to start the car for the first time in over three weeks. I don't think I'm ready to take the dogs to the park yet since walking is so hard. They'll just have to get fat and lazy. If I still can't walk next week I may ask Jon to take the hounds back to camp for another stint.

In the meantime my television gave out last Thursday night and the battery on the handset of my cordless phone died today. What else will go wrong?

Ah, the next thing to go wrong is that I just took 10 minutes out to call my regular doctor. It's a challenge with a rotary phone. She's not in the clinic all week. Guess I'm destined to be drug-free. I've been very weepy the last couple of days. Don't know if that's a result of stopping the Vicodin or the result of the pain and worry or just my normal reaction to total frustration. The pain does seem to diminish, although not disappear, if I do nothing for many hours. There's no hope for any relief tonight but maybe if I take it very easy tomorrow the pain will be less awful by the afternoon.

Wow, I did go on, didn't I? Sorry. I'm using this as a sort of diary. Thanks to all of you who are continuing to email and call and help. (If anyone calls tonight, I probably won't answer. Too hard to get from couch to rotary phone in study. The new battery for the cordless phone has to charge for ten hours.)

Much love from Janet, Achates and Creusa


P.S. Forgot one piece of good news. Went to Richmond Kaiser last Thursday (courtesy of one of my many wonderful chauffeurs) and had the stitiches taken out. The itching the first two weeks was horrible. I'm allergic to almost anything on my skin. The Tegaderm and the Steri-strips just about did me in. PA checked the incision today and said it looks good. I can go back to water aerobics if I can tolerate the movement. Probably shall wait until I hear from the surgeon. I hope he'll call early in the week but am sure he'll be terribly backlogged.