Sylvia's Journal

Can one try too hard? It is the hyper achiever in me that tried to beat the odds and accelerate my recovery. Not so fast buddy! I had noticed something hard right behind my knee. Whatever it was, it was getting in the way of the knee bending exercises, the calf stretch, the heel-raise exercise, and walking.  I pointed it out to my physical therapist who started to explore and then massage it. Given that blood clots are still possible at this post-op phase, and that massage of the clot is the worst you can do, I made him nervous when I mentioned this. We cut the therapy session short, and he urged me to have someone make sure it was not a clot. Urgent care or emergency room? We decided to go to urgent care. That turned out to be a smart move. The urgent care doctor ordered an ultrasound which he was able to arrange within the next hour. At one of the local hospitals. We were able to let go of the fear to spend the rest of the day, and maybe even an evening at the ER. We were home a few hours later with the good news that it was not a blood clot but rather a fluid-filled cyst, making me wonder whether it was the result of my overly enthusiastic attempt to get my knee bending like normal as soon as possible.

What to do about the cyst is not clear. I alerted the doctor’s PAs. We’ll see what can be done. In the meantime, I did my own research and learned that one should apply heat. And here I had been putting an icepack at the back and front of my knee three times to four times a day. After putting a hot compress against it a few times, it has not provided much relief (yet).

I also researched post-surgery opioid withdrawal and learned some surprising things. A reputable medical website, and several others I trust, suggest limiting opioid pain meds to no more than two weeks. I had been on them for 4. I (re)discovered that I am very sensitive to opioid pain medication. I will never ever take it again if I can help it (I have another knee replacement ahead of me, maybe next year). On Monday I am starting my 2^nd week of withdrawal. The symptoms (there are many and I have experienced/am experiencing many of them) seem to get worse rather than subside: upset stomach, jittery, chills, too cold or too hot, diarrhea, nausea, nothing tastes good, bad taste in my mouth that no food, no matter how delicious under normal circumstances can remove, and finally no or low appetite. If my last memory of withdrawal from 2 weeks of taking Oxycontin thirteen years ago was only three days of yuck, I may now be in for a whole other week. 

The combination of the cyst and the withdrawal broke the fast (too fast?) linear progression towards recovery. Today I meditated about all this in my Saturday morning Music & Imagery  (M&I) group. In M&I, after an initial meditation we express on how we feel right now using color, shapes, texture, and then express on paper what we want more of. We then listen to 3 pieces of music selected by our facilitator (and friend) Christine and draw what the music brings up in us and give it a title. The last piece is of our own choosing. I choose music that is a very old friend of mine and that not only brings wonderful memories back but also is soothing in the present. The themes in my drawings contain my marching orders for the rest of my recovery. The titles of the 6 images of today were: Can-do-won’t-do; Looking for more humility and less pushy; Looking for some pleasant surprises; No shortcuts; The weather will improve; Drop the main sail, go slow and steady!

Two days after the one-month mark, I realized I may have taken the corner a little too fast. This included getting off the opioids. I had set myself a goal of switching completely to Naproxen and Tylenol. My body didn’t like it and I slid into withdrawal, a feeling I recognized from when I was getting off the Oxycontin after two weeks of use after the plane crash, now 15 years ago. I had not expected to have that experience (it is not as intense, but still) in kicking the Hydrocodone habit, since it has a much shorter shelf life (4 hours instead of a continuous administration every 12 hours).

Despite the uncomfortable nights and the withdrawal symptoms, I have made good progress in bending my knee (120 degrees as of yesterday) and strengthening the muscles surrounding the knee. The accomplishments have required a great deal of perseverance, discipline, and grit to do the 3 times/day exercises and two intense PT visits a week. 

So all in all, everything is going in the right direction.

Close to the four-week milestone of postoperative recovery, I have completed the turn of the first corner. I can do things now that I was unable to do even a short week ago, like getting out of a chair without pushing myself up with my hands or pedaling all the way around on a stationary bike, things I couldn’t do 2 days ago. I am done with the pain pills during the day, only still at bedtime and in the morning when I get ready for my first round of exercises for the day, bringing me closer to the goal of getting off the opioids entirely next week.

Today my physical therapist measured the angle of my bent knee at 115 degrees. This is 10 degrees more than last Monday, and 25 degrees more than when I was released from home care PT on May 19. This has not been an easy accomplishment: three daily rounds of uncomfortable exercises and a lot of huffing and puffing and icing. The goal is 120 degrees. This is the angle at which I should be able to do most of what a knee is supposed to be able to do in terms of daily living activities. Maybe I will get to that next week. We are starting to add a few more strengthening exercises which Axel and I can do together because many of his are the same.

Today we did another walk along the Gloucester Esplanade. It was a beautiful warm day with a cool sea breeze.  I walked for 15 minutes without a cane. That too is progress. For the first time I noticed how smoothly my new knee is operating, not distracted by walker or cane or a knee that didn’t yet want to bend much. It is smoothly sliding back and forth, painless compared to the pre-op grinding of bone on bone. That is still happening with the other knee which made the contrast even more noticeable. In the not too far future, the left knee will need the same treatment. This is one of the reasons I keep this weekly log so that I know what to expect when the pain memories have disappeared. The prize at the far end of this knee replacement business is two sets of artificial knee joints happily gliding along without friction allowing for long walks again. Hopefully sometime in 2024 I can look back and wonder why I waited so long.

I am at the three-week mark now. I think I have rounded a first corner. It’s a soft rounding, not a sharp turn. Gone are the sharp pains that require a constant supply of opioids. Now the pans are more of the ‘gnawing/nagging’ type, a level of discomfort in the background, always. But these are no longer keeping me from sleeping and the awkwardness of having to sleep on my back is gone. I can sleep on my sides which allows for much tossing and turning.

Yesterday we went to the Gloucester Esplanade. It is Axel’s preferred walking place that has beauty on both sides: the flowers planted by the Generous Gardeners on one side and the ocean on the other. We were not the only ones. On a warm day like it was yesterday, all of Gloucester seems to stream to this magical place. We walked for about 15 minutes, me with a cane, and then Axel continued his walk while I rested in the shade by the Bocci courts with an icepack on my knee and my giant (800+ pages) book (The Luminaries by Eleanor Catton), a page turner I could not put away.

I continue to do my exercises 3 times a day. Some days, when I push my limits a bit too far, they leave me crippled. I decided to back off a bit and not push quite as much. I must remember about moderation rather than my tendency to assume it is all-or-nothing.

This week is starting to normalize again. Normal meaning that I won’t spent whole days mostly lying on my bed. Of course, this allowed me to read my 800-page book which otherwise would have taken me months. I have a few doctor’s appointments, unrelated to my knee, and a few hours of paid work.  I am easing back into the world.

Two weeks ago I couldn’t do much with my knee, just a slight bend, hobbling behind my walker. Now I can bend it 90 degrees and can walk with ease, even without a cane. 

Last week I was graduated from home based physical therapy to outpatient PT. I had my first evaluation to establish the baseline. It was pretty good in terms of numbers but not so good pain wise. It had not occurred to me that having the visit to the surgeon and PT within hours of each other might be a bit much. By the time I arrived home I was in great pain and exhausted, especially after we tacked on a visit to Whole Foods to get some lunch as Axel was starting to get hangry and I was irritable because of the pain.

I decided to skip the evening round of exercises and went to sleep early, with my head down and legs up. I slept well except that my body wakes up each time I need another pain pill. I don’t have to set an alarm. The body knows when the next one is due.

I now realize I had underestimated the recovery and the effort it takes to function well with a new knee. I had listened to many people who had had knee replacements done in the past and all were very happy. I think they had forgotten those unpleasant moments as we humans have a great capacity to forget about pain. If we could re-live pain as it was, in all its intensity, women would probably have no more than one child. 

And so, I had listened to the stories that included ‘a few days of intense pain,’ or, ‘after 10 days or 2 weeks things got better,’ and believed them. I am writing this all down so when it is time for the next knee, I can look up what things were really like: very unpleasant, to put it mildly, and this said by someone who has a great deal of tolerance for pain.

Over the last few months before the operation, I had struggled doing the stretching and strengthening exercises that the knee doctor had recommended. They were rather overwhelming, more than an hour a day. At first, I decided to not do them at all, an illogical response to the overwhelm, from all to nothing. Finally, about 6 weeks ago, I split them up in half, doing one half each day. I was able to do that up to a week before the surgery because my walking was starting to deteriorate. I blamed the exercises and did not know what to do until Tessa reminded me that our bodies know what to do. I asked my body and it said: stop! 

That month of exercises is now paying off, as people had told me it would. I must remember that too. Most of the exercises I do know are the same as the ones I did before, except they are so much more difficult and exhausting. My motto is ‘biting through,’ knowing that this too will come to an end.

It was exactly one week ago that I left for the hospital for my right knee replacement. That knee had been grinding away at the cartilage of which hardly any remained. There is only so much pain one can learn to live with knowing that there is a solution. And so, the die was cast earlier this year, with the calculation that Axel had to take on the caretaker role, half a year into is recovery from the serious back surgery last November. We figured, he should be able to manage after he had managed to look after himself while I was in South African in February. We both believed he should now also be able to look after me in addition to himself. And so, we set the date for May 8, just far enough ahead of summer that I could still expect to be enjoying this summer on two legs, and with at least one functioning knee. The other knee will be next but let’s not get ahead of ourselves.

Our daughters were lined up to take turns helping during the first and most acute phase of recovery.  I am so grateful to have these daughters in our lives. Yesterday’s Mother’s Day for me is more like ‘Grateful For Daughters’ Day. 

The operation went well, and after one and a half hours I was rolled into the recovery room. A few hours later I was released from the hospital as I had opted out of a hospital stay if all had gone as planned. It was a lovely day, and my nerve block was still active so that I felt on top of the world, pushing my walker around the house with ease.  Sita’s mother-in-law who is a retired nurse, showed up just as we arrived and helped me out of the car, and then explained all the pills that we had picked up from the pharmacy. Tessa showed up later, we sorted the pills into pill boxes and the electronic pill reminder app that we discovered during Axel’s convalescence. The app’s tracking and sorting functions are very when one is in an opioid brain fog.

A few weeks earlier I learned from my insurance company that, if I wanted this, a food preparation service would be sending me weekly boxes of fresh prepared, then frozen meals (lunch, dinner, and some snack) for the next eight weeks. Of course, I said. There were a few glitches with the delivery that first week. The company sent another box to make up for the glitch and now we have a freezer full of meals and soups. The meals are healthy and balanced and quite nice. Even belter, they took away the pressure on my caregivers to think about lunches and dinners.

It was a hard landing the next day when the nerve block wore out. The visiting nurse and the visiting physical therapist showed up the next day to take my vitals and offer advice, encouragement, and support. PT started right away, no time to waste. I was up and moving around in my walker with remarkable ease. They taught me tricks to get in and out of bed.

The PT came again a few days later and immediately started piling new exercises on the 4 she had left me with only 2 days earlier. PTs do that, they never take exercises away, they only add. Axel’s back exercises number in the twenties now. Every morning he is surveying the various piles (stretches, strengthening, less important, more important). He organizes and straightens the piles in a way that makes me think, just doing that, touching the sheets, counts towards doing the exercises. We have more and more of those copied sheets lying around our bedroom.

The new exercises were hard and painful. I dreaded having to do them 3 times a day. I did them faithfully for the required repetitions and holding seconds for a day and a half. That night I was in great pain and doubled the pain medication, to no avail. Two days and nights like that and I became irritable and depressed. When the nurse checked in by phone on Saturday morning, I told her that the new exercises where killing me and she said, “ well, we don’t want you dead, so back off.” I went on a strike to test my theory that these exercises were setting me back. I have been doing much better and no longer needed to double up the pain medication. The day of reckoning will come when the PT shows up again tomorrow.