Let’s do another test

Today I had an abdominal MRI, looking specifically at my kidneys, following the abdominal CT angiogram from 3 weeks ago, which found a mass in the right kidney. I already knew about that from two previous abdominal MRI’s that also found a renal mass. The second time, the radiologist commented that this had been found before and someone needed to evaluate it because it had gotten bigger. So they did in 2020 with a bunch of different expensive scanning devices and basically said I didn’t need to worry about it but to have it checked in a few years. We did that today.

It’s hard doing an MRI when you’re my size and it’s a regular MRI machine; I couldn’t use the open MRI because they were using contrast dye and that’s limited to the machine in the hospital. Using contrast dye means getting an IV, which for me usually means multiple attempts and blown veins. Today was no different. I listened to music while the machine clanged around me and tried to keep my spasming leg from moving the rest of me. When it was over, I went shopping in the gift shop and treated myself to an iced chai latte while I waited for my transportation.

Radiology had the report ready in MyChart almost before I got home from the hospital. I so love the ability to look online and read results for myself without waiting until yet another doctor’s appointment! I’m capable of reading the results for myself, though I sometimes look up the big words in Google if needed to understand what they’re talking about.

The report said: “Proteinaceous cyst in the anterior right kidney measuring 3.2 cm, increased in size from 2.7 cm on the March 2020 exam. This is still Bosniak 2, benign, and requires no specific imaging follow up.” Woohoo! Still benign, if slightly larger. A proteinaceous cyst is a complex cyst containing fluid. They are not cancers and do not require surgery. They typically need to be watched with repeated imaging tests – which is what we just did.

I just sent a message to the doctor in follow up, suggesting that we could cancel the meeting on Friday. Transportation is so much more complicated for me now and I don’t want to go through all the hassle for a 10 minute appointment that tells me things look fine and to look at it again in a few years. We’ll see if the doctor agrees.

I think the next test coming up is another leg ultrasound in June, following up the angiogram. At least I don’t have to study for these things.

Apparently I’m Not Eating Enough Apples

I’m eating strawberries and peaches, not apples, these days, which may explain the medical appointments that appeared on my calendar.

Today was my Medicare Wellness Visit where you get asked all the questions you already answered on their e-checkin system. My BP was 136/62, which is great. I got the “Remember these 5 words” test that Trump nailed so successfully (my words were banana, tie, pen, house, car). This is a long way from an annual physical; I guess they think that we old people on Medicare don’t need to actually be touched but just answer a bunch of questions. My doctor is leaving her current practice tomorrow and I’m grateful that I was able to see her before she moves on, though I plan to follow her. She renewed all of the medications that she manages for me, then Cliff the Phlebotomist did the easiest stick for blood that I’ve had lo these many years. Tomorrow I’ll know what those red drops of blood reveal. At least this didn’t happen at 4am the way it almost always does when you’re in a medical facility. Oh, and I also got a referral to physical therapy for some ultrasound on the sore ankle. I really can’t feel a lot down there so I don’t know whether it’s better or not.

But one unexpected twist was being sent for a STAT ultrasound of my lower right leg to rule out possible deep vein thrombosis. My leg from toe to groin has been extra puffy with edema which we’re treating with diuretics, but a “squeeze test” of the calf almost had me jumping out of the chair, so DVT had to be ruled out. It’s a good thing that I went, because I just got a call telling me that they found a clot in my foot. What??? He called in a blood thinner for me to take once a day for three months which will dissolve the clot. But wow. Good thing I’m seeing my own cardiologist in 2 weeks. Good thing my doctor sent me for the ultrasound.

Tomorrow is a trip to see the pain doctor to review SI joint pains that have been giving me a hard time sleeping at night. I know I’m not sleeping in the best position to relieve those, but I don’t have much of a choice – I’m flat on my back with the bed raised up at the feet and a little at the head. I would give anything to sleep in my side but that’s just not in the cards. I don’t know if this doctor will think an SI joint injection would help (they have before) or if he’ll want to do something else.

Maybe I should just try eating more apples.

Eight months later

I don’t know if I will ever be able to do more than I can right now. The home therapist told me that while it’s certainly possible to see additional changes up to two years post-op, it’s also possible that I won’t see any improvement at all in the next six months. I need to be prepared for that while not being depressed. I don’t much like my new normal but I’m getting used to it. But it’s hard to keep the enthusiasm up for therapy and workouts and exercise when it seems that that’s all I’ve been doing for eight months.

On the other hand, even if I don’t get better, I don’t want to go backwards. I’ve worked too hard and am mostly independent; I want to stay that way.

I have to be weight-bearing every day one way or another to make sure my legs don’t atrophy. I work out on the NuStep five days a week (on the advice of therapy) to strengthen my legs. Everything I do takes so much time and most mornings, the words heard most often are “Oh, crap!” as my legs run into doors or get stuck on carpets, or I see cat vomit to be cleaned up. Dressing takes 20-40 minutes depending on whether I can wear the zipper shoes or need the AFO’s to start the day. And if I start with zipper shoes, I will need to change to AFO’s later to do therapy and walking. I hate them. And I hate putting them on.

On the other hand, I have feet. And I’m not freezing in a dark basement on a concrete floor while bombs go off around me. I’ve thought about what it would be like to have my limits and be trying to survive in Ukraine right now. I think I would be dead because I couldn’t escape. That certainly brings things home. My limits are still in a warm, comfortable home with food, water, heat, and Internet service, and I’m grateful for that.

At the same time, I’ve made some medical decisions about my body in light of being mostly in the chair now. I’ve told my doctor and my family that I am not going to do any diagnostic testing such as mammograms and colonoscopies because I don’t want to do anything if the tests find a problem. I know this could mean a shorter life, and frankly, that’s okay with me. While I have people who love me, I have no husband, partner, or children and the medical decisions are mine to make. I’ve been totally dependent on others to help me turn, stand, move, use the bathroom, etc., and I don’t want to go there again. I don’t have a death wish and I’m not planning to do anything to end my life. I just don’t want to have medicine prolong it just because they can. I am not afraid of death when it is my time.

That time is not now, and I’m not giving up even though I’m tired of my new normal. But I also can’t operate on the kind of higher-stress levels that I had in early therapy. I’m trying to figure out how to have an open house of some sort here to show my new home to my local friends – who I really miss seeing. And also to work out some sort of life that doesn’t only include NuStep, lunch, walking, and therapy. That gets old fast. It already has.

I’m ready to weed out and declutter more, though it’s much harder to do from a wheelchair than when you can just stand up. I have clothes to bundle up and kitchen things to take to Hangers for Hope, as well as some broken or other weird things that just need to be tossed. And several bags of books to go to the used bookstore. I have a big pile of Birkenstock sandals that I can no longer wear and purses that I won’t use that can find new homes. But I need help to get things packed up and carted away to appropriate places. It’s hard to ask for help but I know that it will be there if I do. It’s time for a plan to make it happen so I can make some breathing room. You know, before the open house.

Image credit: Photo 51239796 / Calendar © Flynt | Dreamstime.com

Today’s Medical Update

I saw my surgeon this morning for my three month post-op follow up. It was a short appointment and to be frank, I’m not completely sure that it was all that helpful. He seemed a bit shocked when I told him I’d spent 9 weeks in residential rehab but was pleased to know that I was home and managing well. I showed him my leg range of motion, which was better than on my last visit, and let him know that I am going to PT three times a week with a focus on isolating and strengthening muscles, specifically with e-stim, which he thought was great. At my request (because it was from the therapists), he wrote a prescription for a custom articulated AFO brace for the right foot to help with foot drop. Of course, I don’t know where to take it and his office was not much help on that. I’m to go back in a few months but to remember that it will take up to a year to see all the results of surgery.

Yeah, yeah, I know that part.

Then this afternoon I went back for therapy and to give them a report on the doctor’s visit. My therapist’s husband works at the Olympic Center and she is going to ask him for suggestions of where I can take that AFO prescription to be filled, since it was his recommendation in the first place that I get one. For the next weeks, I’m to concentrate on walking at home without the left AFO (the one that has been giving me fits) but WITH the right one, using my aide to help me walk in the mornings in our hallways. My legs will be freshest in the morning, and this way I can get in more steps. Today I walked 260 feet with that combination and it felt fine, and was the most I’ve walked at one time in weeks. When I’m at therapy, I’ll leave the AFO at home and we’ll work on building things up without it. I like the idea of doing both.

So there’s progress. Not trying to use the left AFO feels like a real gift since it’s given me such fits. That alone was worth the visits.

Going for Option 3

My weight loss journey is stalled and I’m annoyed. But then I’m annoyed at myself for BEING annoyed, which is not very productive or helpful. It’s only really a plateau if you’re trying hard to lose and just are stuck in the same place or small range for more than 2 weeks. Well, how about 6 months? I’ve basically been within the same 4 pounds since January, going down to 243 and back up to 247, then down, then up, then down, then up. Of course, I’m not exactly trying very hard to lose but I’m still annoyed when I don’t.

So I see a few options:

  1. Give up completely and eat whatever I want. This not really an option because I refuse to allow myself to be that fat and out of control again.
  2. Buckle down and eat a lower calorie target, weigh and measure, move more, and eliminate all the things I’m enjoying as “treats.” I know, this is extreme. I can have things I enjoy in small numbers. Who really needs 3 donuts just because they are there? I did all of this when I started, going great guns and losing a lot fast. But it never keeps up at that rate and I knew it wouldn’t. I just really don’t want to do this.
  3. Relax and decide to keep doing what I’m doing as early maintenance. Without working overly hard at it, I seem to have found a weight range that I can stick to without too much trouble, where my body feels pretty comfortable (except the knee), and that I can sustain while giving myself permission to have a Jersey Mike sub (always #2, the Mike’s Way) or a Dairy Queen kid’s cone just because I want to, without going crazy.
  4. Beat myself up for failing to lose.

I’m just torn. Because I feel as though I am failing if I’m not actively working to lose weight. It’s what I’ve done my whole life. I’m really bad at maintenance, or at least my history with it is. I’m great at losing huge amounts, then gaining it all back again. And I so do not want that to happen. I cannot let it happen again. That is a definition of failure more profound than failing to lose more.

I’m great at beating myself up for eating something “bad” even though I know in theory that no food is bad. There are just some foods that are better for me to stay away from, generally food with lots of carbs. But beating myself up just makes me depressed and sad, reaching for food for comfort. The whole “go to the gym and get those endorphins going” thing isn’t ingrained to replace it.

But since giving up is Not An Option and working hard to really lose doesn’t seem to be one either, I am choosing to commit to maintaining in the little range where I am now. Saying it is one thing. Doing it is something else, and it’s really all up in my head. I know how to do this – I’ve been doing this for months. I just need to give myself permission to choose Option 3.

The reality is that I have maintained a loss of 65 lbs for 9 months. For someone who doesn’t maintain well, this is huge. I haven’t been at this weight for over 7 years. There’s damage in my body that I can’t change from carrying massive amounts of excess weight for most of my life. But although I am still morbidly obese, my blood pressure is normal. My A1C, cholesterol, and triglyceride levels are normal. My BMI dropped 11.2 points. I’ve made significant changes that will make my life healthier and easier. I need to give myself permission to celebrate those changes and to recognize that the only person judging me right now is myself. It’s time to get over it.