Hold Tight and Pretend It's a Plan

This blog began in February 2019 when I had a cancer diagnosis and hysterectomy all in one week.  It went quiet for a while and got revived whenever Jon had some health news to report, most especially a year ago with his bone marrow transplant. That transplant was one year ago today. It is always hard to know when to stop reporting, but usually it is time when there doesn't seem to be anything new.  Even though each day brings more improvement, I think we have reached the time when it's not news anymore about this particular health issue. But if there is anything that has become clear in the last 14 years (Jon's diagnosis was on April 3, 2009), there will always be more health news. Now four out of five of us in this family have an ongoing story -- at the moment, only Benjamin seems to be intact. He noted this when we were in Israel, with some trepidation.  I can't tell who the current readers are, but I am guessing that if there is a need to resume reporting, I will be...

I think I already said somewhere that the PT guy says I am advanced. This just means that I had muscles that were strong before the surgery and I still do, just the ones attached to my knee have been damaged and need repair. But yesterday I surprised both of us by standing upright, no hands, on just my surgery leg. This is such big news! I haven't been able to do that in five years or more. The exercises that hurt the most are the ones that require me to try really hard to bend the knee. Excruciating. The ones that feel easy are the ones that use big muscles.  Apparently some people just can't lift their leg off the floor. It's nice to be seen as advanced -- it helps to be a relatively young joint patient, I am sure.  I am having some trouble remembering to keep my walker with me as I move around the house. There are plenty of surfaces to balance on.   This morning I went down to the stand for a meeting with Carrie and I realized after a bit that I had left my cane o...

The days go quickly, with all that needs to happen. PT requires focus but the rest of it is easy. Highlights of Wednesday: I figured out how we could get the broccoli planted without me or Jon, and now there are 1400 beautiful broccoli plants in the ground, thanks to people who know how to do things and are up for anything new (we now have a mechanical transplanter on this farm again, for the first time in a long time).  Jon went to Baltimore to see Dr. Imus for his one year checkup. The transplant was almost exactly a year ago.  Jon did not get the remission we hoped for out of this one, but Dr. Imus is confident and hopeful that there are plenty of options to address this disease.  Jon's myeloma is progressing, getting more aggressive, the doctor says. So Jon will resume the chemo regimen that he was using a year ago -- back to a combination of infusions, pills and steroids.  I listened to the appointment on the phone and I could visualize the two of them in that l...

The longer I sit in this spot, connected to all that is happening outside, the fuller my schedule gets. The physical therapist arrived right on time, just at the end of my Zoom meeting with Ciara and Michael. As soon as he left, I had more calls to make. And then I also had to squeeze in these exercises. PT appears to be a series of exercises designed to strengthen exactly what needs to be strengthened by doing repetitions until you just can't do them anymore, and asking your knee to bend in ways that it is really unprepared to bend. The instructions say to do them five times in a day.  I did not manage to have that many different exercise sessions, but I did three, and I can keep trying.  It certainly hurts.  I can imagine my range of motion will improve, but it will take some doing. I cooked my own breakfast and lunch because Jon was gone all day. I took my daily constitutional on my golf cart -- it was a sunny, beautiful day. I had a series of visitors. I read as much ...

It isn't really clear when you don't need pain meds anymore, and it isn't all that clear when they are working or what they are doing. But now we are on Day 5 and that seems like long enough to be on opiates, especially when I am not feeling out of control with pain.  So this morning I took my last oxycodone pill and then decided to see what happened.  New areas of pain appeared, but nothing dramatic. Now I know where the incision is (don't touch that) and it is hard to find a truly comfortable position for this leg, but it isn't off the charts terrible. So far so good. Still on Tylenol and Celebrex (not sure if that has anything to do with pain but it is an anti-inflammatory) and I get two shots of blood thinner every day.  That seems like enough medicine. Phone calls and zoom meetings and emails and visits and naps and meals -- all from the chair in the middle of the livingroom. The PT guy is coming tomorrow, not today. The system seems kind of random, but I'm...

What is most striking to me now is how weak I feel. I don't know how I know that I am weak because I haven't tried to do anything strenuous, but just doing something that requires any physical focus makes me feel slightly queasy, like you would imagine a heart patient feeling if they pushed it too hard. This is the way your body keeps you from going outside the bounds of healing, I guess. My mind would let me do a lot more, but this body is just useless. So I sit here in my comfortable chair with all of my comforting things within reach -- computer, water, phone, calendar, books.  I don't actually have the umph to read more than a few pages before it feels like too much effort == and the book is really good. Nice people come to visit me, bringing me news from the fields, from the outdoors.  Jon makes me breakfast and lunch and dinner. I nap whenever.  For my one expedition of the day, I went back to the stand to see the market truck coming home. It was Easter and the crow...

This is a good thing, really. I felt so good that I kept trying to do a little more.  But, in fact, my knee is still only three days out from getting chopped open and reconstructed, and underneath this ace bandage probably not very much has changed. It's just that it hurts less. I had a good night, sleeping well at the beginning and the end and taking a couple hour break in the middle to listen to an audiobook.  Not really energetic enough to read with my eyes, and watching TV seems like too much effort. Listening to a book is about perfect. Jon took Alissa and Jose to the airport at 4:15 in the morning, and that was when it seemed like a good time to go back to sleep. By the time I woke up, the Falls Church crew had unloaded and set up their beautiful display and sent me some photos. I had a banana milkshake for breakfast. Yum.  And then, finally, after three days and three nights of no action at all, the Miralax showed its efficacy.  Everyone had warned me about ox...

 Last night was horrible until 1:30 when the drugs finally caught up with the pain.  Dr. Kinney said I should take 2 oxycodone every four hours for a few days, instead of just one. That was key.  Since then, everything has been much better. I am woozy and sleepy and a little bit nauseous but in much less pain.  In the middle of a text or an email, I fall asleep, my fingers on the keys. But contrary to expectations, today was much better than yesterday.  A series of visitors came through, stopping in briefly, in between my naps.  Outdoors, where I was not, they finished picking and washing vegetables for two markets and the CSA. I didn't even step out of the house. We will see what tomorrow brings.

 I have to say that today was much more painful than yesterday, and the surgeon called his evening to check on me -- and said that Days Two and Three are worse than Day One, so I know what I am up against in the next few days. This may be the most continuous pain I have experienced, since the drugs don't quite match up to the pain level. At least when you have a baby, you get some breaks. And a baby. A knee just doesn't come close to that. Anyway, apparently there will be two days of terribleness and then hopefully things will start to improve. I am so sleepy but I haven't quite learned to sleep through this. Oof.  Jon is doing a great job and some Secret Santas brought over a big pile of Passover-ready food. We will not be hungry.

Mission accomplished. I am sitting in the big recliner, ice machine humming along keeping my knee nicely chilled, feeling only a little bit queasy.  I have a new knee, and that is amazing. It was a full day effort, but the operation itself only took a couple of hours. All the things that worried me did not happen.  The epidural was totally easy (I had psyched myself out, never having had a spinal puncture).  I didn't feel anything.  I got great care.  A nurse was with me during my whole recovery, tending to my every need, answering all my questions. She could tell that I was definitely going home today. The whole experience was reassuring and comforting.  Contrary to what Lani might have experienced, my knee actually does hurt.  Or at least every part of me that is attached to the knee.  But it is manageable because I can take drugs and they help.  As I was warned, I had to demonstrate that I could climb stairs and get myself to the bathroom ...