BelowTheMean – Stryde Femurs w/ Dr. Debiparshad – Nov 2020

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Hi BelowTheMean,

The details are perfect and so appreciated!  I would keep it going as is and/or however you are able to do. :-)  I can remember that I used to hang on to every word of the diaries that came before my surgery.  You're doing a great service to future CLL'ers!  The diaries just keep getting better and better.  Frankly, it was the great diaries I read that lead me to having the confidence to go forward with the life changing CLL procedure.  You're doing great, man!

IFS

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I read it all too! Thank you for putting that much time into your diary, it's really beneficial to know about all the details involved with this procedure

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@AppleFanBoy, @jem_semarc, @IFS, @AllAboutPerspective, and anyone else who is readying this - thanks for the support guys! I’ll continue to write detailed daily entries until at least my first post-op office visit. I’m sure once I start working again and my surgical pains are mostly gone, my days will be less interesting from a CLL perspective (which should be actually a good thing theoretically.)

Surgery Day +8, Lengthening Day 5 (+1mm, 5.66mm total)

I woke up without an alarm around 6am. This whole week I’ve been waking up without an alarm. I wanted to say waking up “naturally”, but I’m not sure how natural waking up from the pain of your broken femurs every day is. Actually, I was in minimal pain waking up this morning and didn’t need to take any medications right away. I walked to the bathroom, which wasn’t the easiest, as usual first thing in the morning, but nonetheless tolerable. I came back and sat on my bed checking my messages from the previous night. At 7am exactly, I took my full round of morning meds. I feel now, that taking meds on a schedule is probably a good thing since that’s how they’re designed to work. It’s possible to experiment with, or reduce painkiller usage, but you should probably be confident about your pain levels before doing so.

The meds kicked in pretty quickly, and I felt the best that I have yet since surgery, like I could even fully weight-bear on my left leg (not that I was going to try of course.) I could walk around pretty easily, though obviously with the post-CLL waddle. I did all my warmup PT exercises easily and a lengthening session. Nothing special this time around, though I’m placing the ERC machine more to the right of the X on my right leg (still within the bars of course) since it looks like this is giving a better signal to the ERC than the initial positioning I was trying. Afterwards I added a frozen water bottle to each ice pump and iced my legs for 20 min while playing on my phone.

After finishing with the ice, I stretched a little bit, then got up to go to the kitchen and made a big and fancy breakfast. It seems like my pain and mood somehow align with my appetite. Even though I’m not fully healed from surgery, the lack of pain definitely helps me in wanting to eat more. I ate the biggest meal yet since surgery, with lots of protein, fiber, and carbs even. I’m starting to eat out of my Airbnb stash instead of craving delivery since I don't mind walking around the kitchenette preparing food. Also, in hope I can finish most of what I bought and it doesn’t go to waste.

It was at this point that I wrote the previous giant 4-day journal entry before this. Since it took hours, and I was mostly sitting in bed with my laptop on my legs, I had to take frequent breaks so I wouldn’t be in pain, numb, or anything like that. The breaks worked well since I wanted to get a snack or drink frequently as well, and the pain meds were giving me major cottonmouth again. Every time I stood up to take a quick break, I had a much easier time getting up than in previous days, and I was actually pretty surprised. I feel like I have a major improvement in walking power today, even though nothing has changed in my routine.

After listening to music for hours and updating my journal, it was lunch time already. However, I wasn’t hungry (naturally, since I had so many snacks) so I did some stretches and played some video games. My legs started hurting a bit so I took some muscle relaxant. The short acting opioid had probably worn off already.

3pm came by and I felt good, so I decided to do another lengthening session. First, I did all my PT exercises, which were still pretty easy, given that my hydrocodone had already worn off. Then I swapped the water bottles from my ice pumps with frozen ones. These aren’t as frozen as the ones that stayed in the fridge overnight, but I can’t do anything about that. Before I lengthened, I cleared out a pathway in my Airbnb and recorded a video of my walk with my phone. Here is the video:



Note, in this video I was probably halfway through an MS Contin extended release pill, and just had a muscle relaxant pill, but had no short acting opioid in my system. My pain level while recording the video was only 1/10. Also, I swear my legs are swollen, these pants are super loose normally!

After taking a quick look and making sure the recording was okay, I ran the ERC on each leg and then iced up for 30 minutes. (I moved the pads mid-icing to get my hip suture area as well, and so I wouldn’t go over 20 minutes on any single patch of skin.) After that I sat up and did some stretches, then chatted with friends and family for a bit to keep my mood up.

(This next paragraph is kind of gross, so skip it if you’re easily grossed out.) About an hour later, while I was still laying in bed, I suddenly had the urge to go #2. I didn’t have time to warm up my legs, so I had to just get off the bed and walk to the bathroom. After sitting down, I immediately realized that I would be able to go. However, it still wasn’t easy, and I had to push. Finally I got it all out and it was about a 1.5 on the Bristol stool scale. No issues with discoloration, but it was kind of coarse coming out, so I was a bit worried for my hemorrhoids issue. Fortunately there wasn’t any blood in the toilet, but I did see a tiny bit on the TP after wiping. It was little enough that even I (someone paranoid about both blood clots and not being able to stop bleeding) wasn’t concerned. Even though it was only the second time I went #2 I figured I was getting a lot better and I decided that I should try to be more consistent with my laxative drug intake and try and eat more regularly.

After that I sat down and played with my phone again until dinner time. Although I was not hungry yet, I figured I should probably eat something. I wanted to do some stretches before getting out of bed since my MS Contin was about to wear off. However, as soon as I moved my legs I realized they were in pain and pretty sore since they have been wrapped under the blanket for an extended duration. Heat feels great when I’m not moving, but not moving for a while feels terrible once I do start moving. Before I got the chance to stretch, I realized that I had to go to the bathroom immediately, so I got up without warming up and walked over to the bathroom again. It was doable, though I was in 4-5/10 pain like I had just left the hospital again. While washing my hands, I noticed that my hands were shaking too. I wasn’t sure if this was from the overall pain, or narcotic withdrawal. It’s moments like these that make me wary of the potential of addition and to keep my painkiller usage minimal.

I went back and stood by my bed and checked the time - 6:30pm exactly. I couldn’t even stand in one place without feeling pain, so I immediately took a hydrocodone pill. I sat on the bed to recover a bit, and realized that I was at 3-4 pain just laying down, with very tight legs. If I moved and did a stretch thought, it would slightly lower the overall pain, and focus the pain more on whatever muscle I was using, so I just did some light PT exercises until the pain started going down. By 7pm, I was back to 1/10 pain staying still, so the hydrocodone works pretty well and kicks in fast. I was still in a little pain while moving around but I got up, took my laxatives on schedule, and then made dinner.

While I was waiting for the tiny microwave to heat up my plate of food, I did some more stretches, since I knew I was going to be sitting there watching YouTube while eating. A couple of minutes later when the microwave went off, I walked over there with no pain at all, and brought dinner back to my bed and put it on my nightstand. At this point, I’m very confident that I don’t need to be taking both hydrocodone and MS Contin at the same time, since hydrocodone is enough to relieve my pain by itself. MS Contin clearly works as well, after the hydrocodone wears off. However, I’m still not sure exactly how to time the pills so that I feel no pain at all, but still take the minimum number of pills.

While eating and watching shows, I thought a little about what I should do regarding pain pills. I planned to wait until the slightest sign that the hydrocodone was starting to wear off, and then immediately take MS Contin. If it doesn’t wear off by 10pm then I would take MS Contin anyway as an overnight protection, since it would be nearly time to go to bed. Then I shouldn’t need any hydrocodone until the following day.

Around 8pm I realized that I had been sitting for quite a while but at least I was in 0/10 pain, as if I hadn’t even had the surgery. I moved my legs a little to test and got a sharp pain on the left side. I guess I was only imagining things! After a while I did start to feel a bit of muscle stiffness even while stationary. I tried to fight back by taking a MS Contin pill instead of muscle relaxant, since I wanted to be able to take one tomorrow morning if needed. The MS Contin actually did something, and I went back to 0/10 pain.

After 10pm I realized that I had been in bed too long watching YouTube, and got ready to do the last lengthening session of the night. I warmed up with all the standard PT exercises, but I had been inactive for so long that I was slow and my muscles were stiff. I ended up taking a muscle relaxant pill after warming up, but my legs stayed sore. I guess it's that time of the night, where I have to just get things done and then go to sleep hoping tomorrow is better. I quickly did the lengthening session with no problems, and then swapped out the warm water bottles in my ice pump buckets for frozen ones. Amusingly it reminds me of swapping nuclear fuel rods in one of those spent fuel pools you see on TV

Finally, I laid down to ice my legs. Then I posted this entry to the journal and we're now caught up to real time! I'm about to go to sleep. Good night all!

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You are right when you say that: When dormant and feeling a nagging subtle pain, get up and do some exercises- yup that sounds like a good idea even in normal life. Laying in bed on my phone all day is way worse than walking around my house for a little bit
It's good you have the conscience to recognize this already. I feel tons of CLL people suffer unecessarily because they lay in bed all day even with stryde.. those people don't have diaries as you would've expected haha

Mscontin seems very strong. Also seems good you can do PT without pain relievers.. that's good.

And that video looks solid too. Faster than I expected after a week post op even with walker. Good job

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youll do great under Kevin Debiparshad's care.

the legs seems swollen please ask him about that. to be honest I thought you were fat when I first saw the video Lol.

I LOVE this diary and attention to details.

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Quote from: las vegas baby on November 25, 2020, 01:04:04 PMthe legs seems swollen please ask him about that. to be honest I thought you were fat when I first saw the video Lol.
All the pics I've sent the team, they say it looks normal. I feel like my swelling has gone down considerably today though, so fingers crossed.

Quote from: ghkid2019 on November 25, 2020, 12:21:55 PMMscontin seems very strong. Also seems good you can do PT without pain relievers.. that's good.
I usually try to take something before PT. After all, I'm still experiencing post-surgical pains, just a little bit less than the average person it seems. MS Contin is indeed very strong to me, but the nurses at the hospital actually treated the extended release pill as a "weak painkiller" as far as I could tell. (with Toradol as the strong painkiller.)

Surgery Day +9, Lengthening Day 6 (+1mm, 6.66mm total)

I woke up at 7am to the sound of my alarm. I didn’t sleep very well the night before, both because of difficulty falling asleep and because of waking up randomly, whether having to go to the bathroom or not. My watch said I got about 4.5 hours of sleep over the 7 hours I was in bed. After waking up, I realized I had to go to the bathroom yet again, so hopefully that means I’m hydrating well and not just have a small bladder. I sat back down on the bed, I silenced all my followup alarms and then ate my morning meds. I had PT fairly early today, and wanted to get in a session beforehand.

I did my warmup exercises and got ready to lengthen. I leaned my cane against the bed, then turned around to grab the ERC device and move it from the table to the bed. At this moment, the cane slipped and smacked the ground with a loud bang. With no weight support and ERC in hand, I flinched hard. I imagine that any fast or twitchy movement is not good during lengthening, but fortunately I didn’t drop the ERC or fall. Remember to be careful with all your stuff during lengthening, I’ve dropped things on the ground many times in the last week and it’s a pain to pick it up. Fortunately I have a grabber tool, though at this point I don’t think I need it anymore, I just use it when I’m feeling really lazy.

Lengthening went well, with no hitches. I haven’t heard the ERC make that clicking noise like it did on my right leg the first few times lengthening. I’ll assume for now that everything is on track. I’m getting x-rays in less than a week anyway, so I just need to be patient for a little longer. I had no time to ice up after lengthening, so I continued to stretch a bit, while listening to music. I wanted to make sure that my legs didn’t get stiff or tense before heading to PT. I also changed clothes and waited for the aide to arrive.

The aide got here on time and it was the same one, so she knew how to get to my unit. Once she was inside, I had her help take out the garbage, then I said we could head over early, in case they would let me start early at the PT place. Everything was getting pretty routine at this point. When we got to PT I had only been sitting in the car for about 15 minutes and my legs were a bit stiff already. I walked in with the walker, and walking usually helps me warm up. I was early, but they were able to start me early so I didn’t have to wait too long.

Today’s PT was harder than the last session, which makes sense since the PTs record what you did each session and try to push you harder each time. I’ve come to realize that warming up on the bicycle is a really good idea. Even though my left quad was extremely tight and sore when I started to cycle, and every revolution of the pedals made it hurt a bit, after four minutes (out of the five minutes I was supposed to pedal) my left quad suddenly decided to play nice and loosen up. I think I will definitely try using a stationary bike for future warm-ups when I return to my city. Today was also the first time they had some extra workouts for my left leg compared to my right one, as they are well aware that my left leg is weaker. However, in the last two days it has been weight-bearing fine, so I have no complaints about the left side aside from weakness and muscle tightness. At the end of this PT session I got both the hot towel treatment and a massage for the sore spot on my left quad just above the knee. Both of these were really good, and I really appreciated them. I’m pretty sure I’m going to continue PT even when I’m lengthening from home if I can get this level of service every time I go. Before leaving, I set up my next two PT appointments, and I’m not sure if they are covered or not since they’re technically during the third week, but I’m sure they’ll be happy to send me a bill later if it’s not covered.

At the PT clinic I also bumped into another one of Dr D’s patients from the east coast who also had his surgery last week, though not on the same day. He could tell that we were CLL brothers since we were both wearing shorts that revealed our surprisingly similar bandage locations. If you’re on here, feel free to PM me to chat! (Though for all I know he might not even know that this forum exists.)

After leaving PT, the aide drove me to the grocery store again. On top of a big pack of ice, I also needed tape to secure some of the waterproof dressing covers on my legs. There’s still almost a week until I get the chance to remove them, so I should keep them intact if possible. The grocery store was absolutely packed with people trying to shop for Thanksgiving dinner. You would think that the lockdown rules would have fewer people being out and about, but I suppose that is not the case. Inside the store, I felt kind of bad because it was crowded, and I was going down the main aisle to the pharmacy section and there were a bunch of people following me, going really slowly. There’s not much I could do about it though, since I couldn’t increase my walking pace. In the first aid section there was indeed 3M Nexcare tape, and it was pretty cheap, so I just went with that.

On the drive back from the grocery store my legs were getting tired already. Between all the PT and walking and warming up early this morning to lengthen, it felt like my legs had been working for hours (and I suppose they have been.) When we got back inside, I tried taking off my shoes and was able to, and then I hopped on the bed to relax for a bit. The aide helped me fill my ice pump buckets with fresh ice and then tidied up the place a bit. She left at exactly the three-hour mark, so that was perfect. I’m not sure if I’ll need the home health care company to assist me for next week’s appointments. I feel like I should be able to handle transportation on my own. I have the whole long weekend to decide, but right now I’m leaning toward no. If today was the last session, then I would have used them for only 15 hours total.

Now that I was all alone, I noticed that I was hungry. I made a big bowl of noodles and a turkey sandwich and ate those pretty quickly. The timing wasn’t great, since I wanted to take a nap, but I also wanted to do my second lengthening session first, but it was too early to lengthen. Therefore, to kill some time I got my computer out and wrote the first half of this entry and watched some YouTube.

By the time I got off the computer I wanted some snacks and walked around a little in the Airbnb, it was 2:30pm and I needed to do a lengthening session. I sat down on the bed and noticed that my calves were no longer swollen. I have no idea when it happened, but they were soft now (unless I flex my calf muscle.) I also noticed that my hamstring bruise on each side was still growing, and both sides of my right foot were bruised below the ankle. None of it is painful though, so it’s probably connected to post-surgery swelling and bruising while being on Xarelto. At least that’s what Dr D’s team has told me every time I sent over pictures. I suppose they’ve seen a lot more cases than I have, so if it was serious I’m sure they would recognize it and tell me.

I did a full round of PT exercises (which got me kind of sweaty) and I felt like my flexibility was still okay, so I did a set of stretches for all the main muscles as well. After that I sat down to lengthen. I guess from this point forward, if I don’t make any comments about using the device, that means it worked normally, because using it has definitely become routine for me now. After lengthening it was time to ice my legs up. Since I had real ice cubes I set a timer for 20 minutes so I wouldn’t hurt my skin. Afterwards I felt pretty good. I got the tape out that I bought earlier and fortunately I also had a pair of nail scissors that I brought with me, so it was easy to cut the tape into the exact shapes I needed. After I was done, I was confident that no sweat would get into the bandages. I’m not too worried about shower water since I was still only using bath wipes to clean myself. In less than a week, if all goes well Dr. D will remove the dressings anyway.

Now in the late afternoon I had to decide if I wanted to keep my legs active for the rest of the day (a bit hard) or rest a bit and let my legs get stiff. I figured it would be a while before I did the final lengthening session and I still wanted to try and take a nap to catch up on sleep, so I lay down for a bit without looking at my phone or laptop. I was sleepy very quickly, but I couldn’t get into a good position for sleeping. My thighs would get tight and uncomfortable if I kept my legs straight, but they would also become uncomfortable if I slept with my knees bent. Also, both positions could potentially make my heels numb depending on what angle I was pushing my heels into the bed. So for an hour and a half I tossed and turned in the two or three positions I could hold though I know I got at least a little shut eye during the period since I had some weird dreams.

I finally got up when I had to pee, then took a hydrocodone pill since it was past 7pm already. I sat back down on bed and started to do a few light warmup exercises and then I realized I was actually pretty hungry, so I proceeded to make dinner. After dinner I played with my phone for a bit, and was actually pretty comfortable the whole time sitting in bed, as opposed to when I was trying to nap. It may also be because I switched back and forth from legs straight to knees bent 90 degrees every 20 or 30 minutes, which I think helps a bit with general stiffness.

Now it was time for the final lengthening of the day. I did all my PT exercises, did my stretch routine, then ran the ERC on each leg. After that, I did my stretch routine again, then proceeded to ice my thighs. The ice from earlier in the day still hadn’t fully melted yet so I thoroughly enjoyed the coldness. Afterwards, I got ready to go to bed. Btw, I don’t think I’ve talked about hygiene that much in this journal yet, but in the hospital I didn’t have supplies to brush my teeth at all (since no one told me to bring any) and I don’t think I would have been able to do it unless I could do it from the bed. But the first day I got back from the hospital I could already stand for a minute or two without any support, so brushing, flossing, and washing were no problem for me. After coming out of the bathroom I sat down, finished this post, and now I’m getting ready to go to bed. I haven’t taken any medicine for the last four hours or so, but I’m pretty confident I’ll be fine until tomorrow morning.

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Thanks for all of the work you are putting in to make this diary, it is a brilliant read and helps tremendously.
If you can, please upload as many progress video's/pictures as possible.
I wish you the best of luck and can't wait to read your next update!

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Quote from: Quad Stryde on November 29, 2020, 11:21:29 PMThanks for all of the work you are putting in to make this diary, it is a brilliant read and helps tremendously.
If you can, please upload as many progress video's/pictures as possible.
I wish you the best of luck and can't wait to read your next update!
I don't currently plan to upload any pictures, as there are already plenty on here for various things related to lengthening, and I don't think there's much that can't be described with words. As for videos, I may consider uploading more if I feel like there is no way for anyone to identify me from the videos.

Surgery Day +10, Lengthening Day 7 (+1mm, 7.66mm total)

I woke up at 7:30am. I already knew that my sleep stats were going to be pretty bad, but my watch data showed that I only got 4.5 hours of sleep out of about 7 hours in bed and I had woken up 12 times last night! I only remember going to the bathroom once though. For whatever reason I couldn’t fall asleep at all for the first few hours I was in bed. I kept tossing and turning in bed and felt way too hot underneath the blanket or way too cold without the blanket covering me. All I could do was keep changing positions and how much of my body was covered by the blanket in hopes that I could find an optimal way to fall asleep. In the last few days I haven’t felt too tired from lack of sleep because I normally sleep less than 8 hours a night, but I also normally fall asleep quickly when I lay down and sleep solidly until my alarm goes off. I look forward to the day I can achieve this type of sleep quality again.

I got up and went to the restroom. It had been nearly 12 hours since I took any painkillers, so I was expecting to be in a lot of pain, but surprisingly I was only about 2/10 pain while laying down, and maybe 3-4/10 when walking around. If someone had told me that my pain level while walking around without any painkillers would be tolerable within 10 days of my surgery, I wouldn't have believed them. Even last night I would have been skeptical about this. On the level of stiffness though it is just as bad as before. Even if it didn’t hurt to walk around with no painkillers, it was hard to walk since my legs don’t bend that much before I warm them up.

I proceeded to take all my meds since I’d rather be at 0/10 pain than have consistent low level pain. Also, I was planning to do a workout and lengthening session soon, during which I’m sure my pain level would quickly increase if I pushed myself. Unfortunately my plan hit a hitch; at this time I needed to use the restroom badly, and upon using the restroom I realized it might take a while. Straining after surgery is generally a bad idea, so I tried my best to go #2 without pushing too hard, and it took a really long time. I literally had to stand up twice and take breaks from sitting so my legs wouldn’t go numb. My advice here is that even if you reduce painkiller usage, you’ll want to make sure you keep up on laxative usage. Finally, I finished to the extent that I could. I went into the kitchen and made a giant bowl of oatmeal. Upon finishing the oatmeal, it was time to lengthen.

Lengthening has been getting more and more routine for me. After finished all my warm up exercises and stretches, I ran the ERC on each leg. I was starting to get the ice machines ready, but realized I had to go to the restroom again. After sitting on the toilet for a while I came back and iced my legs for 20 minutes. Since I was laying down while icing I got kind of sleepy, so after I took the ice wraps off I tried to take a nap. I managed to fall asleep quickly, but at some point I dreamed that I kicked a ball which caused my right leg to twitch in real life and startled me awake. I had gotten a decent nap in though.

I ate a big lunch, then had to use the restroom yet again. After that, I played with my phone and browsed the web. Nothing too exciting, and I felt like my pain level was pretty good, though I wasn’t moving around very much. At some point I dozed off again, and got back up around 4pm. Now I had to get ready for the second lengthening of the day. Since I had been stagnant for a while, I did some extra sets of PT exercises and extra stretches before lengthening. As usual, I also did a set of stretches after lengthening, but before using the ice. I talked to some people further along than me and they all said that they stopped using ice packs early on during distraction, so I guess I am the only one who needs ice to handle the continuous swelling. Good thing the hospital gave me those ice pumps then.

After lengthening I sat in bed playing on my phone and computer for a couple of hours. Shifting back and forth between legs straight and knees bent and getting up to use the restroom and eat snacks I was mostly pain-free the whole time. I probably should have warmed up more before getting up each time, but even just coming straight off the bed I was only in 2-3/10 pain walking around, though I was walking quite stiffly. By the time I noticed that I could take more drugs it was almost 8:30pm. I took another MS Contin and the laxatives; while I don’t think I necessarily need the pain meds at this point, I think they still do help a little, especially when I need to stretch harder for PT exercises.

The rest of the evening wasn’t too exciting either. I just chatted with friends on my phone while sitting in bed and changing positions every so often. I started my last set of PT exercises early again, so I’d have extra time to do more sets before lengthening. I lengthened, then stretched again, but didn’t ice my legs since I wasn’t feeling swollen at all. Afterwards, I just went to bed. Given the number of times I went #2 on this day, I can definitely say my bowel movements were regular again.

Surgery Day +11, Lengthening Day 8 (+1mm, 8.66mm total)

Last night I actually got decent sleep (at least compared to this previous week.) For just over 8 hours in bed, I was fully asleep for 6.7 hours. I did still wake up many times due to leg pains and needing to stretch or adjust my legs, but it seems like I fell back asleep pretty quickly each time. I also only needed to get up to use the restroom once the entire night, which is the fewest times in one night since the catheter came out. My current baseline pain level is at 1-2/10, where I think my legs just felt chronically uncomfortable no matter what position I'm in. I got up and used the restroom to get ready to start the day.

Upon returning to my bedside, I took a set of pills just like yesterday morning. Although the pain was tolerable, I still wanted to minimize it before doing any heavy physical activity. After that I started my pre-lengthening exercises. I noticed that they were a bit harder than before. Maybe I was just hungry, and tired because I was lacking energy. I’m probably not keeping up with the calories needed to sustain my body’s current metabolism. My joints also felt weaker than before. I was pretty sure the MS Contin hadn’t kicked in yet, but I pushed through and finished everything. I lengthened to 7.99mm, so I’m basically 10% of the way (well, assuming I make it all the way to 8cm.) While 10% seems like a small amount of progress, it surely feels bigger than any of the tiny mm counts that I’ve been dealing with so far. Anyway, I’m counting it as a personal milestone.

Afterwards, without doing my post-lengthening stretches I rushed to the kitchen and heated up a giant bowl of oatmeal for breakfast. I also put my walker next to the door, since I was planning to take an outdoor walk later in the day. I sat down on the bed to rest a bit while I was waiting for the food to heat up and then cool to a temperature I could safely consume. After waiting a bit, I went back into the kitchen to eat my breakfast. Then I went back to sit on the bed and use my computer for a bit. Since Las Vegas wasn't actually that warm right now, I wanted to wait until the daily high temperature was hit in the early afternoon to go out for my walk. Also, if I did it in the early afternoon, I could come back and lengthen right away with very warmed up legs.

On a side note, I can feel that I’m starting to get a tiny bit impatient with this whole process over the last few days. The novelty of everything has already worn off, and daily tasks are starting to feel more and more tedious. I’m also unsure of my true progress since I haven’t gone to the doctor to get x-rays yet, and I still have four more days until my appointment. Maybe seeing those first x-rays with the gap in each femur and a little bit of callus growing will reinvigorate me to the process. It certainly doesn’t help that I’m doing this all alone in a different city halfway across the country. At this point, I do feel a little homesick, especially having just spent Thanksgiving alone. I have talked to many of my friends over the last few weeks, but there is certainly a psychological barrier given that I haven’t told any of them what I’ve done. I guess having this anonymous journal is helping me talk myself through this process once step at a time.

After lunch I just sat around for a bit resting, and then the time finally came to do my first outdoor walk. Over the last few days I’ve felt stronger each day, and I could already walk days ago, so I was fairly confident about going outside and taking a walk for the first time. First, to warm up I took out the garbage in my unit. This was just walking 10 feet from the entrance of the Airbnb at the side of the house to the trash can by the garage door with my cane a couple of times. That felt quite easy and I believed I could even go out for a walk with just the cane at that point, but I still wanted to use the walker just to be safe. I made sure that I had my keys and phone with me, then proceeded to walk down the driveway to the sidewalk. I followed the sidewalk to the main street and continued along the sidewalk for one block and reached a crossroad. I wasn’t ready to attempt to cross the street yet, so I turned back and walked the same distance back to the Airbnb. When I got back I checked the stats from my watch. I had walked about 0.4 miles at a 54 min/mile pace (which is almost 10 times slower than my personal best mile sprint.) However, I felt like I certainly could improve my pace over time, since I wasn’t trying to go very fast, and I was focusing instead on my gait.

I realized that I hadn’t drank any water before leaving for my walk and I was quite thirsty. I chugged half a bottle of ice cold Gatorade, which rapidly quenched my thirst. Based on my one experience, I think it’s a good idea to walk for the sake of practicing walking. For me at the moment, since I can’t easily walk around in my Airbnb due to space limitations, going outside is a reasonable alternative. I believe that I will need to try and do at least one outdoor walk like this every day to optimize my recovery. This is also in line with what both the doctor and PT have told me about trying to get in a certain number of steps daily, then increasing this number of step each subsequent week during recovery.

After eating another snack I sat down on the bed to lengthen while my legs were still relatively warmed up. This went by smoothly, especially given that I hadn't taken any pain medications since the morning. After lengthening I sat down on the bed do some work. However, as soon as I relaxed I suddenly became tired, which is probably not all that surprising given the physical activity had I just performed, and I really wanted to sleep. Since there was nothing else I had to do immediately, I simply pulled the covers over my body and quickly fell asleep. I woke up a couple of times, but easily went back to sleep after doing some half-conscious leg stretches. The nap ended up being over 2 hours long and it was dark outside when I fully awakened. I got up to eat dinner, and after that I just played on my laptop and phone.

A short while later it was time to take some more medications. I took MS Contin and both laxatives. I haven’t taken my short-acting opioid for two days now, with no serious pain issues. However, I did notice that my joints (even ones unrelated to the lower body, like my fingers and wrists) were a bit more sensitive than they used to be. If that persists, then I may have to ask the doctor about it, since I don't see how it's related to the surgery. I continued playing on my phone for another hour or two, by which time the MS Contin had kicked in. Then I warmed up and stretched in preparation for the last lengthening session of the day, which I completed without a hitch. After that it was time to go to bed. I was feeling very optimistic at this point.

Unfortunately, the night didn’t end here. Just as I thought I was no longer in pain anymore, my joints and legs started hurting more and more as I lay in bed. I believe this was a new type of pain that I hadn’t experienced yet. If I lay completely still, the joints behind my knees would still hurt 3/10 on both legs. If I moved around, then my muscles would feel really stiff and ache continuously. I couldn’t settle into a position that was 0/10 pain, or even 1/10 pain. As I lay there trying, eventually I reached a 5-6/10 pain which was a throbbing muscle ache in both my legs. I got up and took a muscle relaxer in hopes that it would fix my problem, and lay back down. I twisted and turned and eventually thought to put a pillow between my knees, which enabled me to lay in a few new positions. After some time the drug must have kicked in, since my legs calmed down a bit and I eventually fell asleep.

Surgery Day +12, Lengthening Day 9 (+1mm, 9.66mm total)

I woke up very tired to my 7am alarm. I hit snooze a couple of times and then decided to get up. Just laying there I was at the same level of throbbing pain as the night before and it didn’t feel good at all. I got up to use the restroom, then came back and immediately took my morning drugs. This time I included a hydrocodone pill in hopes that it could provide some much needed relief. I lay back down, and wrapped my legs under the blanket and waited in pain. I checked my phone and it said I had gotten about 6.2 hours of real sleep the night before, which was actually quite a bit considering I remember tossing and turning frequently the night before.

While laying in bed, I fell asleep again and then awakened about an hour later. My legs still felt stiff and tight, but the pain had been greatly dampened by the Hydrocodone. On the overall pain front, I felt like I had regressed a couple of days, but with so many painkillers left, maybe it was my own fault for not taking them regularly. I’m not sure what the source of pain was, and maybe it had to do with my long walk yesterday, but if it was related to that then there was quite a delay from finishing the walk to the onset of pain!

I got up and made the bed, then climbed onto the bed to do my warmup exercises and stretch. I lengthened another 1/3 of a mm and my pain level stayed the same. Afterwards, I decided to clean up my ice pump setup so it wouldn’t be a tripping hazard. My swelling has gone down significantly from the peak three or four days ago, so I really don’t think I need the ice anymore. I also made breakfast since my stomach was empty, though I wasn’t hungry at all since I was taking opioid painkillers again, so I had to force myself to eat. My mouth was also very dry, which is another side effect of the strong opioid, so I drank a lot of water all morning.

It was at this point that I decided I was going to try and get some work done. I don’t want to take too much time off work, since the year-end performance review is coming soon, and I want to maintain the overall good impression that my boss has of me leading up to this review. Getting a solid year-end bonus would go a long way toward defraying the cost of doing CLL. However, based on how I felt in the last few weeks, I'm pretty sure that I will likely only be able to put in 4-5 hours of real work a day for the next few months since I'm going to need to spend a lot of time stretching, exercising, lengthening, and just resting during the day. Therefore, if I wanted to perform well, I would have to either be very efficient with my time or try and spread my work out over a longer period.

I pulled out my work laptop for the first time in weeks and booted it up. I was pretty productive and caught up on all my emails and summarized all the outstanding tasks I needed to finish in the near future. I took a quick break for lunch, and continued working after lunch. By the early afternoon, I was feeling quite productive and it was time for my daily walk again. While I could have taken another hydrocodone pill at this point in time, I decided not to since I was feeling okay. I was actually back at 0/10 pain sitting on the bed, and 2/10 pain walking around, mostly due to stiffness. I could always take a painkiller later in the day if the heavy leg pain from last night decided to reassert itself. Plus, I don't want to be on pain meds while taking a long walk, since I might not realize I'm pushing myself too hard if can't feel it. I changed into outdoor clothes, grabbed my walker, and started tracking my workout on my watch.

I walked the exact same distance as yesterday, about 0.4 miles, at the blistering pace of 46 min/mile. Again, I was not focused on speed, but rather gait. I was able to go a little faster just because I felt better. I tried to keep my legs closer together and raise my knees higher and bend my knee more while walking but it was not easy and I’m sure I still looked like a waddling penguin. When I got back I drank some Gatorade, changed into my indoor clothes, and sat down on the bed to lengthen. Lengthening was normal, though I felt extra tight after running the ERC. I tried to do a couple of stretches on the bed while listening to music, but this made me very sleepy. I wasn’t sure if I wanted to take a nap at this point, so I got my computer out and watched a movie. I did not fall asleep.

After a while it was dinnertime and I wanted some food. When I tried to get up, I realized that I hadn’t had any painkillers at all for a while and that the throbbing pain from the last few days felt like it was about to come back. I wonder if it is because of the long walks I’ve been taking or something else. I resisted taking any painkillers at first hoping it would go away, but eventually I was at 3-4/10 pain just lying down and not moving so I took a Hydrocodone. My pain gradually improved starting about 30 minutes after ingesting the pill. I was still at 1-2/10 pain though, so I took a muscle relaxant as well.

My baseline pain went down to 0/10 approximately 30 minutes after taking the muscle relaxant, but when I got up to use the restroom it was still difficult and painful to walk. My muscles were not "relaxed" and still stiff. Therefore I took an MS Contin pill as a last resort. Finally I was at a reasonable level of pain, though it took every type of painkiller I had. I really hope all this recent pain is related to the surgery and that it will go away soon, because if it persists then I’m eventually going to run out of painkillers (and there are no refills!) If these are lengthening pains, then I don’t see how I’m going to be able to lengthen any reasonable amount based on the amount of pain I currently have at under 10mm. Regardless, I have more than enough painkillers to last until my first doctor’s appointment, so hopefully I’ll have a solution at that point.

Finally it was late enough to do my last lengthening session of the day. I started with my usual PT exercises and stretching first. With all the painkillers running through me this was fairly easy, though I still feel like I have more joint pain doing these exercises than I did a few days ago. Once finished with the stretches, I ran the ERC on each leg. I noticed that my thighs actually looked longer than before but I'm pretty sure it's more from the massive reduction of swelling over the last few days than any lengthening gains. Once I was finished with lengthening I stretched again and focused on the areas that were feeling pain after lengthening. Unfortunately a large portion of the pain was coming from behind the knee cap, the same area where I would get throbbing pain if I didn’t take painkillers.

I suppose both the surgery and the process of lengthening are impacting similar areas on my legs, so surely there is some interconnection of pain between the two. However, I guess at this point I can still only take it one step at a time. Right now I just hope that lengthening from 1-2 cm won’t be harder than 0-1 cm was. It was time to go to bed now, and I lay down relatively early in the night with 2-3/10 pain and no painkillers available. I grabbed a pillow to put between my legs and hoped I could fall asleep soon. Fortunately I did.

Surgery Day +13, Lengthening Day 10 (+1mm, 10.66mm total)

I fully woke up at 7:45am, after repeatedly hitting snooze on my silent alarm for over an hour. My sleep data showed that I was asleep for 7.6 hours out of 8.5 hours in bed, which was great. I only woke up 2-3 times last night to adjust my legs, and I only woke up for an extended period once at 4am to go to the bathroom and drink water. I got up and went to the restroom again, feeling about 2-3/10 pain while walking over, mostly from stiffness. Then I came back and took all my morning drugs, including painkillers. I went to make breakfast as I waited for the painkillers to kick in. I remembered some of my dreams from last night. In one of them I was parched, just like in real-life. Another one was a sci-fi horror dream, though not quite a nightmare because I had the tools to defend myself in the dream.

While I was zoned out the toaster popped and my food was ready. I ate over the kitchen sink so I would have one less plate to clean later. I spent some time thinking about how much food I had left since I would be staying in Vegas for another two weeks or so. I would definitely need to resupply on milk and bottled water, so I was going to have to use a grocery delivery service, which I have never done before. I decided to try Instacart, and found a random coupon for first time users. I ordered everything I needed, plus some extra stuff since I had to get to $35 for free delivery. While I was grocery shopping on my computer, the painkillers had all kicked in and I was sitting in bed with 0/10 pain. I put my computer away and started my pre-lengthening exercises.

Lengthening this morning was a lot easier than lengthening last night. I’m not sure why this is, since I was on painkillers while lengthening both last night and this morning. Maybe it has to do with overall pain or some kind of timing. I do feel like generally I have more pain at night than I do during the day. It could also be because there’s a longer gap between my last and first lengthening of each day than between my middle and last lengthening. Regardless, after lengthening I did a couple more stretches, then sat down in the bed to do a little bit of work while waiting for my grocery delivery.

The groceries arrived right before noon. Of course the delivery driver dropped it off at the wrong entrance of the house, even though I explicitly stated on the order where to drop it off. Fortunately, the Airbnb host was home and he helped carry everything into my unit. I started preparing lunch, then suddenly got a slight nosebleed. I plugged it with some tissue paper and finished making lunch. Any type of bleeding is a concern while on Xarelto, but the air here is dry and I have a history of nosebleeds, so I personally would not be too concerned unless I was unable to stop the bleeding. Sometime later when I removed the tissue, the bleeding had stopped, so it wasn't a big deal to me. After lunch, I continued working until about 2:30pm, when it was time for my daily walk and 2nd lengthening.

Even though it seems like some of the pain I’m experiencing at night could be related to these walks, I don’t think it’s too likely. I won’t be doing a long walk tomorrow since I will be going to onsite PT in the afternoon, so I can use the evening pain today as a benchmark for tomorrow. I tried to walk the same distance as usual, but before I made it to the end of the block, my left quadricep started hurting and I decided to turn around. I rested briefly then continued back to the Airbnb slowly. My final distance was 0.25 miles (400m) at a pace of 49 min/mile. After I got back I sat on the bed and stretched my quadriceps and hamstrings, then ran the ERC on each leg. I did feel a little tight after lengthening, but I have had pretty much been the same feeling after many of my lengthening sessions. After lengthening I stretched some more, though to no avail as my legs continued to have a 1-2/10 pain from general tightness.

I didn’t take any more painkillers at this point; I just sat on the bed and continued to work. Eventually my legs stopped hurting as I was just resting and focused on other things. I got up to use the restroom and had 2-3/10 pain from tightness, which persisted for a bit even after I sat down. I was also getting a little sleepy, so I decided to take a break, take my MS Contin and laxatives, then eat dinner. I watched football while eating dinner and I was distracted enough so that my pain was 0/10. I tried to do some light stretching as well while watching TV.

After a couple of hours it was time to do my last lengthening of the day. I hadn’t taken any painkillers since the MS Contin a few hours ago and I wasn’t sure if I could do my pre-lengthening exercises without any pain reduction. I stood up and walked around for a bit, and had about 3-4/10 pain while walking (though with no warm up) so I decided to take a Hydrocodone pill. Afterwards, I waited for a bit and then started my PT exercises and stretches. One interesting thing I realized while stretching was that while my left quad is tighter than my right quad, my left hamstring is more flexible than my right hamstring. This is also in line with me being able to do a left foot first split and not a right foot first split back in middle school gymnastics. I'm amazed that this asymmetry in flexibility has persisted my entire life.

After the PT exercises and stretches I lengthened both sides, and felt a little bit of tightness on each leg, but not as much as the prior session, possibly because I was on Hydrocodone. I stretched some more, then massaged my sore quads and got ready to go to bed. I think my biggest concern now is differentiating between surgical and lengthening pains. If what I’m feeling after lengthening is residual surgical pains and will go away, then I don’t have any concerns about getting at least a few inches of lengthening. If what I feel after lengthening is lengthening pains, and will continue to be painful at this level after every lengthening, or every few lengthenings, then I will need some kind of painkiller (maybe something that not a narcotic) that I can continue to take to manage the pain after using the ERC. Given my flexibility, I’m a little surprised that I have lengthening pains so early on (if that's what they are.) Especially since I’m still pretty flexible after lengthening my first centimeter. I can still touch my toes with my wrist and almost do a butterfly sit. My quads have lost the most flexibility through surgery, and that might be related to the IT band release, but I don’t have pain in my quads after lengthening. It looks like I’ll have to collect more data over the next few days through trial-and-error and hopefully when I talk to the doctor and PT later this week, they will have some solutions for me!

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Surgery Day +14, Lengthening Day 11 (+1mm, 11.66mm total)

My alarm went off at 6:30am. I hit the snooze button but couldn’t fall asleep, so I just got up. I knew my sleep last night would be bad since I woke up so many times in the middle of the night, and when I checked the stats it was definitely bad - just under 5.5 hours of sleep for nearly 7 hours in bed. I remember awakening at multiple points throughout the night and changing the positioning on my legs repeatedly, though I didn’t have to get up to go to the restroom and I wasn’t thirsty any of the times I woke up. Now that I was fully awake, I got up and went to the bathroom. While walking over I carefully gauged my pain level. Truth be told, it was probably only 2/10, and purely due to stiffness preventing me from bending my knees too far while walking. I wonder if there is some kind of OTC drug that I could use in the morning instead of opiates that could deal with this stiffness.

However, since I only had prescription drugs with me, I took my morning regimen of pills, then went to make breakfast while the painkillers kicked in. While eating, I thought about my pain management strategy some more. Even if some OTC drug could alleviate my stiffness, I wasn’t sure if it would be able to reduce the pain while doing exercises and stretching. I also wasn’t sure if I was even supposed to have pain while doing those, since it seems like exercising and stretches are supposed to alleviate stiffness and tightness. Maybe I needed to try doing my PT exercises, stretching, and lengthening in the morning with no painkillers. This might be the only way for me to know for sure if I absolutely need painkillers to lengthen. If I preemptively take painkillers every morning, then I won’t know if I need them as I breeze through my morning routine.

After eating and checking the morning news, my painkillers had settled in fairly well, so I began my pre-lengthening morning workout. It was very easy to complete everything as I expected, so I did some extra stretches compared to usual. Lengthening was easy as well, with the initial discomfort after using the ERC completely going away after five minutes. I suppose there is the possibility that I could have done everything this morning without any painkillers. I suppose I could try the following morning. After cooling down, I wiped myself down with bath wipes (hopefully I can shower once my sutures are out in a few days) and changed clothes since I was going to PT later today. I can’t be out here looking like a total slob every day! Afterwards, I sat down to do some work.

I worked until lunchtime, took a break to eat lunch and do a few light stretches, and then continued working. By the way, so far I don’t think any of the drugs I’ve taken have impacted my ability to work, and my pain level when sitting still is usually 0/10, even when I’m not on painkillers. I don’t think there is any interference from CLL with working from home, at least in my role. By early afternoon I was still feeling pretty good overall. I wanted to get another lengthening session in well before PT so I wouldn’t feel tight or uncomfortable during PT. However, I was distracted with work and completely forgot about my second lengthening until about an hour before PT.

I quickly started warming up for another lengthening session. I was very tight, so I took a MS Contin pill, even though I wasn’t sure it would do anything. Since I had PT soon, I didn’t want to push myself too hard beforehand so I only did one set of each PT exercise. However, I did make sure to complete all my stretches though. Lengthening was not too bad as the uncomfortable post-lengthening feeling wore off after 15 minutes of extra stretches (or the MS Contin kicked in.) Shortly after, it was time to leave for PT. I called an Uber, which arrived quickly. I brought my walker with me, though mostly as a safety measure and we headed off to the PT clinic.

I could get in and out of the car without any help now and I didn’t need the walker right in front of me for support to get out of the car. I went to PT and they got me started right away on the stationary bike for 10 minutes. At first, since I had no leg pain, it felt much easier than last time. However, after a minute in my joint pain started kicking in, and my knees didn’t feel so good. This lasted all the way until I had two minutes left on the ride, at which point my knee pain became less noticeable. After that, they had me do my full set of PT exercises one at a time. At the end of training I got the hot towel treatment, but no massage, which is quite unfortunately given how sore my quads were.

I called an Uber back to the Airbnb, and when I got back I drank some water and sat around for about 30 minutes with 2-3/10 constant pain. After a bit I realized that the pain wasn’t going to go away anytime soon, so I gave in and took a Hydrocodone pill. Once that kicked in, I felt much better. I think they pushed me pretty hard at PT today, and I guess the MS Contin wasn’t enough for all that I had put my legs through during PT. Hopefully this hydrocodone pill will last through the last lengthening session of the day for me. After getting up again I realized that I was still in pain so I took a muscle relaxer as well. After another 30 minutes, I was finally feeling better and it was about time to make and eat dinner. However, I was not hungry at all due to the opioids, so I had to force myself to eat.

After dinner I was a little sleepy, but I wanted to do some more work before the last lengthening session of the day. Unfortunately, my legs were distracting me and I couldn’t focus at all even though my work was easy. I just didn’t feel like doing it since it wasn’t urgent and I wasn’t in a great mood at the moment with the constant light pain. I feel like even though my legs were in 0-1/10 pain while not moving, I had overdone PT today, since I did PT exercises two times by myself before going to the clinic and doing it a third time there, along with riding the bike. Therefore any movement, even just rearranging my sitting position would trigger some pain in my legs, especially my left kneecap and quad. I decided that I wasn’t going to exercise at all tonight, including just before the final lengthening of the day. I was instead going to lengthen an hour earlier than originally planned and do some extra stretches both before and after lengthening, and then go to bed early.

For once, my plan actually worked fairly well. I was feeling okay during the stretches, and while lengthening was uncomfortable at first (as usual) after doing some post-lengthening stretches, my legs felt much better and I was in low enough pain to lay down and go to sleep early. No more pills needed for the night.

Surgery Day +15, Lengthening Day 12 (+1mm, 12.66mm total)

The next day I missed my alarm in the morning, but woke up around 6:45am, which was early enough that it was fine. For the next 15 minutes or so I lay in bed and tried to find a position that was comfortable, but I could not no matter how hard I tried. Even when I was laying on my back with my legs straight, my legs felt stuffy, stiff, and tight to the point of around 3/10 pain just from all around uncomfortableness. Any type of movement was difficult, and getting up to use the restroom was difficult as well, though I was able to walk over slowly. Although I wanted to see if I could complete my first lengthening session today without any painkillers, it didn’t look like that was going to happen since I woke up with the stiffest legs I’ve had in days. I also remembered having a lot of difficulty sleeping comfortably last night, because I was unable to find a position where I couldn’t feel the leg stiffness and I remember waking up a lot and trying to find a painless position. My watch showed that I had been asleep for 6.5 hours out of 8.4 hours in bed.

After getting up and using the restroom I took all my morning pills. While waiting for the painkillers to kick in, I got up to make breakfast. Since hydrocodone makes me lose my appetite, I figured that eating first would solve that problem. After standing in the kitchen for a bit and eating breakfast, I felt like the painkillers had taken effect. While my legs were still stiff and my quads were a bit sore and felt swollen (they weren’t actually swollen) I couldn’t really feel any of it very strongly. I went back and made my bed, and got ready for the first lengthening session of the day. While doing my PT exercises, I started feeling better as well (or maybe the painkillers fully kicked in.) I got through everything easily, including lengthening. The uncomfortable aftereffect was mild and quickly went away by itself.

I worked for an hour or so and then it was about time to head over to Dr. D’s office for my first post-op visit. I called an Uber for the short trip over. Once I got there, since I had an appointment booked I didn’t have to wait long to go inside, which was fortunate because the lobby was full of elderly spine patients. I was very excited to see some evidence of progress stemming from the hard work I’ve put in over the last two weeks. First, I got my height and weight measured, both of which were more than the last visit. I’m not sure how I gained weight after surgery while everyone else has lost weight, but it is what it is. I’m still way under the weight limit for the 11.5 nail, so a couple of pounds is not a big deal. Also, my calves, quads, and hamstrings all seem to be just as big as they used to be (I’m not swollen anymore so I can make a legit comparison) though they are a lot weaker than before. Maybe my leg muscles will atrophy more later on in the distraction phase. Next, I got my X-rays taken using the EOS machine in a bunch of different positions. This took a while, and I had to lay on my side for the first time since surgery. Fortunately, it wasn’t as bad as I thought, so I might try that position tonight when I go to sleep.

After the X-rays finished developing, I got a chance to talk to Dr. D. We talked about my pain, walking, distraction, etc. Overall, everything has been going well. I looked at the X-rays and they were flawless. My bone alignment was great from both the front and lateral view and the gap was even on both sides and matched what the ERC was reading. I had average bone callus formation, which is perfect because slow formation can result in malunion or similar issues and fast formation can result in premature consolidation. Since other journals on here have recently been talking about nail bending, I asked Dr. D about that as well and he said that because I have the 11.5 nail, it is very unlikely to bend because there is a lot of leeway between my current body weight and the maximum capacity of the nail. He also said that I should work on getting to full weight-bearing as soon as I can, since that would help my gait improve faster than walking with any type of walking aid. He said my penguin gait (aka hip swing) was very noticeable and it wouldn’t easily go away if I kept using the walker.

For painkillers he said I could potentially get a refill at the one month mark, and in the meantime I could supplement acetaminophen if I wanted, as long as the combined total (including the acetaminophen in the hydrocodone pills) that I took in any given day did not exceed the maximum adult dosage. Also, he said that because my hydrocodone pills were the 10mg size, if I didn’t feel like I needed a full pill I could actually just take half a pill (wish I knew earlier, could have saved like 3-4 pills.) He also said that I probably wouldn’t feel any nerve pain or lengthening pains in the next two weeks while I was still in Vegas, so as long as I wasn’t using opioids, I could consider renting a car so that I have more freedom instead of being stuck in the suburbs. Also, he made sure I was taking my Xarelto daily, which I was, so no problems there. The risk of getting a blood clot risk is very real, so taking a blood thinner consistently is very important.

Finally, he removed all the waterproof coverings on my incision sites and cleared me for showering, though I’m not allowed to enter a bath, pool, or hot tub yet. I was quite amazed by how small the incisions were. Given the size of my wound dressings I was expecting some big scars, so I was pleasantly surprised to see only a couple of small lines on my outer leg. There is still one layer of thin bandages over the incisions, but those should fall off within a week or two. Overall, the visit was a great boost for my morale and I felt invigorated when I looked at my bones in the X-ray and realized that everything I’ve done so far has been paying off!

After getting back to the Airbnb I continued working, only taking a break for lunch. Soon it was time for my second lengthening of the day. My legs were at 2/10 baseline pain at this point, with some left knee pain and stiffness from sitting around for so long. It started hurting a bit more when I tried to do my exercises and stretch, so I took half a hydrocodone, then rested a bit before trying to stretch again. The second time it went smoothly; in fact, after lengthening I didn’t feel uncomfortable at all. On a side note, I wonder how much of that post-ERC uncomfortable feeling is psychological. When I run the ERC it only adds 1/3 of a millimeter to my femur, which is tiny, especially this early on when my soft tissue isn’t that tight yet. Maybe I only feel uncomfortable because the ERC makes these loud whirring noises with the electromagnet, and it takes a minute to run on each leg so it feels like it’s doing a lot more to my leg than it actually is. I can only imagine how people must have felt psychologically using the old ERCs that took minutes to lengthen each leg.

Shortly after lengthening, the smell of something really delicious wafted into my nose from outside. My neighbor (the Airbnb host) was cooking and it smelled like grilled steak fajitas. Even though I was on hydrocodone, the smell still made me quite hungry, so I realized the quality of food definitely makes a difference with the amount of appetite on opioids. It looks like my turkey sandwiches and canned soup weren’t cutting it. I decided that I was going to order delivery more frequently during the next two weeks while I’m still in Las Vegas. I also needed to get some acetaminophen, which I figured would be easy with an online grocery order. I also checked the prices on rental cars and calculated that compared to ride sharing, at best I would break even, but most likely renting a car for two weeks would be about 50% more than the total for the Uber rides that I planned to take. It’s not like I was planning to go on a road trip to LA or the Grand Canyon, even over to The Strip, so I thought a rental car would be overkill.

Although I was starting to feel a little sleepy, I continued to work since there were a couple of things I needed to get done by the end of the week that I wanted to make some progress on. By the time I signed off it was dark and time to eat dinner. Since I wasn’t feeling much pain standing still I decided to do the dishes. After that, I microwaved a bunch of food for dinner. While it’ll be nice once I get home and I have a dishwasher and stove, I don’t think it’s necessary for the stay in Vegas. Looking back I probably would have stashed less food and ordered more delivery. I ate in bed as usual while watching YouTube videos on my laptop. I planned to lengthen early and go to bed early again, since I’ve been able to get more sleep this way (or at least more hours attempting to sleep.)

Unfortunately, when I ran out of things to do, the time was only 7pm. I got up and walked to the restroom, which wasn’t easy. I was in quite a bit of pain walking, due to my left quad and possibly the tendon connecting that muscle to my knee. I would say it was 5/10 pain, basically just barely tolerable when walking. If it was any more painful I probably couldn’t walk, because as it was already I just wanted to lay down and rest my legs. For some reason, at this point I remembered that I had brought Biofreeze gel, which other CLL patients had said helped them, so I decided to try it. I opened the tube, and it smelled like Vicks Vaporub. I squeezed some onto each knee and quad area, and then rubbed it into my skin. I would say that it actually worked, since I tried walking a few minutes later and my left knee was only 3/10 pain, which meant I could walk a lot further if I needed to. However, at this point I wasn’t sure if I was still going to need to take a painkiller or not to lengthen later.

Being as bored as I was, I grabbed my work laptop and tried to get some more work done since I had absolutely nothing else to do. Unfortunately, I didn’t have the mental focus to do any work, even with minimal pain sitting around. All I could do was zone out and listen to music for an hour while waiting for a reasonable time to lengthen. I also occasionally got up to eat snacks, though walking on my left leg was painful. Finally it was time for the last lengthening session of the day. Determined to hold out as long as I could without taking an opioid, I started doing my PT exercises right away. They were all doable along with my stretches, because none of the exercises were triggering the left knee pain I was getting from walking.

After warming up, I got out the ERC and lengthened each leg. I only had a mild feeling of discomfort from lengthening, especially compared to previous night sessions. However, when I finally went to bed, my legs started having that familiar throbbing pain from behind the kneecap, and more strongly in the right leg than left. Changing positions did nothing to alleviate the pain, which was easily a 3-4/10 constant pain that would make it incredibly difficult to fall asleep. At this point, if I had acetaminophen I would have tried taking that. Since I didn’t, I was just going to have to take another half a hydrocodone pill to make it through the night. After taking the pill I lay back down hoping it was enough to dull the pain. Shortly after, I dozed off.

Surgery Day +16, Lengthening Day 13 (+1mm, 13.66mm total)

I woke up in a lot of pain in the morning. Well, more like I was in a lot of pain continuously all night, and it was still painful when I awakened. I woke up many times last night including two times I had to go to the restroom. Both times I struggled to walk and could only limp over. When I finally got up, I had missed my alarm by 30 minutes. I remember turning the alarm off and then falling asleep again. I checked my watch data, 6.6 hours asleep out of 8.6 hours in bed. Not the best efficiency, but in line with what I would have expected. I took all my morning meds immediately, including half a hydrocodone and a muscle relaxer pill. I went to the restroom again, which was not easy. I felt pain in the same spot as last night while walking, that is the left quad/tendon/knee area. However, both legs were incredibly stiff as well. I lay back down in bed and waited for the painkillers to kick in. However, the effect was very slow, so I tried using some Biofreeze gel as well. About 30 minutes in, the effect from the gel and pills combined was still not good enough. I was in about 2/10 pain just laying there doing nothing.

I needed to get an early morning lengthening session in though, so I started doing my PT exercises. I hoped that warming up my body would also alleviate some pain. Worst case scenario I would just need to take another half a hydrocodone after lengthening. As I did my exercises, my pain gradually went down to just a bit of tightness and soreness. However, in the middle of my exercises, I got some work emails that distracted me and before I realized it an hour had passed. Once I noticed the time, I quickly did a set of stretches and then ran the ERC on each leg. Since nearly 12 hours had passed since I last used the ERC, the aftereffect was minimal. I still stretched a few times afterwards for good measure, then I went to make breakfast. Unfortunately I had forgotten to eat before the hydrocodone kicked in so I didn’t even realize I was hungry until I remembered that I didn’t eat breakfast. After breakfast I continued to work for a few hours.

I took a break for lunch and walking was a bit painful. However, I was tolerating the pain pretty well when sitting on the bed working, so I didn’t take any additional painkillers. I kept working until the early afternoon when it was time to lengthen again. Since I had a PT session later today I wasn’t planning to work out very hard before lengthening. I did a single set of each exercise, did all my stretches, then ran the ERC on each leg. The aftereffect of lengthening was initially minimal, but then my legs started hurting more and more. I couldn’t focus on work anymore and just sat there trying to minimize the pain. Somehow it worked (maybe I reached a state of meditation) and I wasn’t really feeling too much pain sitting on my bed hugging one leg and doing absolutely nothing. However, if I even moved a tiny bit I would be in pain, and when I tried to get up to walk, I could barely move due to the pain. I gave in and took half of a 10mg hydrocodone pill since I would be going to PT soon anyway. Fifteen minutes later, I didn’t feel any relief, so I took a second half pill, just so I would be okay to do PT. Last time when I left PT I was in quite a bit of pain so I was hoping to avoid that this time. I called an Uber and got ready to head out.

When I got to PT, I still don’t think the hydrocodone had kicked in. Walking from the side of the road into the PT office was pretty painful for my left knee. I checked in at the front desk, and they got me started right away. The first exercise was quad stretches. Normally it’s the stationary bike, but there was already someone on the bike. Based on this guy having a bandage on each IT band I’m pretty sure he was another one of Dr. D’s patients, though I didn’t talk to him. It looked like he was only one week out of surgery because his waterproof dressings were still intact, but he came with only a cane. Here I am in week three still using a walker. I guess I shouldn’t compare myself to other people, because each person’s recovery happens at a different rate. After the stationary bike was free, I cycled for 10 minutes, with my left knee in pain the entire time. Every single revolution of the pedals would cause my left knee to want to pop, which was quite painful. I think I was just having a bad knee day.

Fortunately the rest of the PT session was a lot better. Either the exercises weren’t pressuring my knee as much or the hydrocodone finally kicked in. I finished everything else the PT assistant threw at me fairly easily, then got the hot towel treatment toward the end of the session with my knees elevated. Laying there under the towel I felt 0/10 pain for the first time in hours. After the towel came off, the head PT came by to talk about my flexibility. I was able to roll over and lay on my stomach for the first time since surgery. I didn’t have the confidence to try before, but I definitely could try at the PT clinic. I think adding a new position will definitely help me fall asleep easier so I could try it at night. While I was thinking about all this, the PT just wanted me to learn a new quad stretch, which I did, though it required a rope of sorts. I guess I could try it with a towel in my Airbnb.

After leaving the PT clinic, I didn’t call an Uber right away since I wanted to go to the nearby 7-Eleven to buy some Tylenol. I just didn't need enough other groceries to warrant a delivery to the Airbnb. Given that I could clearly see the 7-Eleven from the entrance of the PT clinic a few hundred feet away, I figured it wouldn’t be too hard to walk over. However, it ended up being much more difficult than I initially believed. First, it was quite cold out, barely over 10 degrees Celsius and windy. Fortunately I had a jacket, but I wore shorts to PT so my legs were cold. Also, my left knee was still bothering me when I walked, though it wasn’t so bad that I couldn’t walk. I did have to keep taking short breaks to flex my left leg though. I think the hydrocodone might have started wearing off already. It took me at least 10 minutes to walk approximately one block down the road to the big intersection.

When I got to the intersection, I looked around for the crossing button and hit it. I needed to cross an eight lane road, so I really hoped whoever designed the walk timer had taken slow people into consideration. I got close to the edge of the road and took a deep breath. Soon the walk light turned green and I started crossing the street like it was a race, except I didn’t have the ability to run. I made it across only two lanes when the walk light switched from solid green to flashing red with 29 seconds left. My adrenaline kicked in and I went into power-walk mode. I focused only on walking fast and sped down the crosswalk without making eye contact with any of the drivers except the one in the last lane. This driver was trying to make a right turn on red, and I don’t think she saw me since she kept edging forward to get a better view of the cars passing by. When I got close to her lane she finally saw me, and visibly slammed on her brakes. It looks like she had decided to let me go first. I made it to the opposing sidewalk right when the walk timer reached zero. I took a short break and stretched my leg, then walked over to the 7-Eleven.

I quickly grabbed two overpriced bottles of generic acetaminophen (they only had 24 pill bottles) and a soda and checked out. Then I quickly called an Uber and returned to my Airbnb. As soon as I got inside and changed into indoor clothing, I popped a 500mg acetaminophen and rested my legs in bed. Miraculously after just 15 minutes or so, I was back at 0/10 pain sitting on the bed. I have high hopes for acetaminophen now, so I hope that was not a fluke. If it’s this effective, then I expect that it will greatly assist me in getting through the next few weeks with reduced opioid usage. Now that I was rested, I realized that I still needed to eat dinner. I walked over to the kitchenette and prepared a giant plate full of food, then brought it back to the bed to eat slowly. I also wanted to get some work done now so I wouldn’t be under pressure tomorrow so I popped open my work laptop as well.

Time passed quickly while I was focused on work and the next thing I knew it was nearly bedtime, which meant I had to get another lengthening session in. I did a light set of PT exercises, and then did all my stretches, plus the extra quad stretch I just learned today. It must have helped a lot, because after lengthening, I didn’t feel any uncomfortable aftereffect at all. While my left knee area (shin, knee, tendons) was bothering me whenever I tried to walk, I felt pretty good with 0/10 pain lying down or sitting, so I didn’t think I needed to take any more medications for the night. Therefore I’m ending today on a high note and going to bed now. Tomorrow my biggest hope is that my left leg starts improving and the pain I feel when I’m walking decreases.

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Great Journal with tons of details. I think I’m at a similar stage in my journey and your journal has been really helpful in keeping me going through this challenging process.