2/27/20: I Wore Wrist Braces to Sleep and Added a Nerve Glide Exercise

In one of the Facebook support groups, someone posted a question about chemo-induced peripheral neuropathy. In the thread, there was a comment from someone whose symptoms and medication history sounded very similar to mine. Like me, she couldn't figure out the cause. Honestly, it was a relief just to know someone else was going through something similar. Anyway, she said her PCP suggested a wrist brace, thinking it might be carpal tunnel syndrome. 

I suddenly remembered that my medical oncologist had made the same suggestion when I first reported my symptoms. At the time, the problem pointed more towards generic swelling and pinched nerves, so I basically forgot about the wrist brace idea. But now that the swelling is down, and I'm still getting symptoms, I figured the wrist brace was worth trying out. If it works, great! If it doesn't, maybe I can rule out carpal tunnel syndrome. 

I ordered 2 ComfyBrace wrist braces and have slept with them every night since Sunday.

Before the braces, I was waking up in the middle of the night with numb and tingly hands. Usually I can make my hands feel better just by rolling onto my side, a trick I figured out after I realized that lying on my back triggered symptoms. With the wrist braces, I don't think my hands feel quite so numb and tingly at night. It's a little hard to tell in the braces, but I think it's an improvement.

I still wake up in the mornings with the "tightness" in my fingers. But I think it's not as bad, and it's wearing off more quickly than before.

Over the last few days, my pinky and ring fingers have actually felt pretty normal, and it's mostly just my thumb, pointer, and middle fingers that feel numb. It's no longer limited to just the fingertips, though. I've been doing my nerve glides, but now that the numbness seems centered around my thumbs and first two fingers, maybe I should be exercising my radial nerve? The nerve glides my physical therapist gave me target the median and ulnar nerves, and since I won't be seeing my physical therapist for a while, I looked up some videos for radial nerve glides to add to my regimen.

I still get occasional mild tingling in both hands, especially when using them, but overall, after the morning "tightness" wears off, my right hand feels a lot better, almost normal. Symptoms in my left hand are worse, but both hands are definitely loads better than before.

6/3/20: Left Hand was a 7 on Pain Scale

The pain is intermittent, not constant.

My left hand is orders of magnitude worse than before. I am typing this with my right hand only. Typing with my left hand is impossible because either my hand hurts and can't be used, or it's fine at the moment but typing makes it worse.

After my last oncology appointment two weeks ago, I started wearing my wrist braces to sleep every night, plus I started doing yoga about every other day. Just a light start, first only 3 series one sun salutations, then gradually adding in 2-3 series two sun salutations. I followed the yoga with leg stretches. I noticed an immediate benefit in my legs; they didn't feel as stiff. But in retrospect, I think poses like the downward dog put the wrong kind of pressure on my wrists, even though my wrists did not hurt while doing yoga.

About a week later, my left hand started acting up. After getting up in the morning, instead of settling into the usual "baseline" (very mild tingling in just the first 3 fingers of both hands), I continued to feel increased numbness and tingling in my left hand throughout the day. Extreme temperatures (a hot plate from the microwave or a cold glass of water) made symptoms worse. Sometimes my fingers themselves felt cold, and I wondered if there was a problem with my blood circulation. In retrospect, at this point, I think I should have taken it easy and babied my left arm. Instead, I kept up with yoga and nerve glides and stretching and walking and housework and gardening as usual.

A few days ago, I woke up with my left hand in pain. It was super numb and tingly, and the pain came from a sensation that something like a rubber band was squeezing my hand so that my fingers felt like their circulation was being cut off, like they were under pressure and would explode. This is the level 7 pain (on a scale of 1 to 10) referred to in this post's title. I freaked out and walked around my bedroom. Any attempt at stretching or nerve glides made it worse. I even took a Lasix (and potassium pill) just to feel like I was doing something. Gradually, after about 30 minutes, my left hand felt better.

For the record, I don't think the Lasix helped. My left hand continued to look noticeably swollen, puffier than my right hand. I didn't even pee a lot, implying there wasn't a lot of excess fluid to get rid of.

At this point, I was worried, but not too worried because the last time my hands freaked me out in the morning, it eventually passed. But what finally got me super worried was that last night, I felt the level 7 pain in my left hand before going to bed, not in the morning when waking up. Putting on the wrist brace made it worse. Walking around helped a little, but what helped the most was squeezing my left hand into a tight fist, with the thumb on the inside. The problem was, once I tried to release the fist, I couldn't open my fingers all the way! It hurt a LOT. Ken noticed a very prominent "line" popping up on the inside of my left wrist, like something was stretched taut, and trying to open my fingers was stretching that line more than it could go. I took two ibuprofen to help dull the pain to fall asleep, no wrist brace on my left hand.

I had made up my mind to call the doctor today because the pain was getting unbearable. In the morning, Ken told me he Googled "carpal tunnel syndrome" and suggested complete rest. I took 2 more ibuprofen and walked around my bedroom for an hour. It's better now. I don't feel like I need to call anymore; I'll see how today goes. I'm going to take it easy for a while. No yoga or housework or gardening. Maybe I'll continue with leg stretches, but only minimal arm stretches, if any. I'll keep walking. Typing only with right hand, but I should limit that, too. Thank God my right hand is still functional. If both hands were acting up with level 7 pain, I honestly don't know what I would do.

4/30/20: Still Managing Numb and Tingly Fingers

The baseline condition of my hands is that they are always very mildy numb and tingly. They always feel worse in the morning, more puffy and tight, and I have to open and close my fingers repeatedly to loosen them up. I also usually wake up with my arms feeling tight on the insides of my elbows (specifically, in that space between my elbow and biceps), and in my underarms, so I have to extend my arms and straighten them out, which also helps my fingers to feel better. My hands are especially sensitive to temperature now, and holding a cold drink or a hot dish makes my fingers feel super tingly.

Yesterday and today, I had a couple worrisome mornings. I woke up suddenly and my hands were VERY numb and tingly, to the point that it felt like something was squeezing some of my fingers so tightly that it hurt, like my circulation was being cut off. Yesterday it was both hands, but today it was just my right hand. Yesterday it was my middle, ring, and pinky fingers that felt squeezed. Today it was my thumb, pointer, and middle fingers. Both mornings this happened before I was ready to get up, so I was still so tired, I didn't want to get out of bed, but I sat upright and extended my arms and moved my fingers, trying to get my hands back to baseline. 

The feeling gradually wore off in about half an hour to an hour. Getting out of bed, walking around, and doing nerve glides definitely helped, but it was so hard to bring myself to do those things when I felt so tired, not ready to start the day.

Of course I've been brainstorming possible explanations for this new problem. I'm still walking, drinking lots of water, and doing nerve glides, but I will admit that I have recently been slacking off on my physical therapy stretches. I need to make a point to get back to doing them every day. 

Something similar, but to a much lesser extent, actually happened a couple weeks ago; I woke up one day with my right hand feeling noticeably more numb and tingly than baseline. That time, I wore my wrist brace the next night, and it helped. So, I'll try that again, too.

For the record, my hands continue to be puffy, my left more so than my right. It's hard to know for sure, but I still figure the root problem is water retention from Lupron (not exemestane, because all of this started before I started taking exemestane) causing my nerves to be pinched. I'm a little worried that it might be lymphedema, but I remember my physical therapist saying that lymphedema tends to get worse as the day goes on, and my symptoms always get better over the course of each day. I will definitely ask my physical therapist about it at my next appointment, once I can get that scheduled.

6/4/20: Doing Nothing Helped

The weirdest part of having these symptoms in my hands is not having any visual indication of what's going on. Someone looking at me would think I'm fine. I feel like, if someone asked me, "How are you?" and I answered with a brief description of the pain and discomfort in my hands, they might think, "Uh... O-kaay... Well, your hands look totally normal, so..." I think it's given me some understanding of how people with hidden disabilities, or chronic pain, might feel.

So after a day of pretty much doing nothing, I was able to wear a wrist brace on both hands to sleep last night, and this morning I woke up feeling a LOT better! My left hand felt like it was back to the old baseline, at least temporarily. But even the slightest use - like trying to type with my left hand - made the numbness and tingling increase. I'm going to keep minimizing the use of my hands and limit my exercise to walking, with the hopes of seeing more improvement, though it sure makes me feel useless.

Of course, doing nothing is not a realistic way of managing this pain. I'm hoping the doing nothing will help me get back to the old baseline, and then gradually I can increase my activity without adversely affecting my hands.

1/17/20: Maintenance Herceptin #2 + Medical Oncologist Appointment + Physical Therapy Appointment #15

Port Access and Blood Draw Appointment

I saw my port nurse at 11:00 to get my port accessed and blood drawn. I told her about the interventional radiologist not wanting to re-open and re-suture the port incision. She nodded her head decisively and said she agreed. I mentioned how I just hope they can get a clean closure when my port comes out, and she suggested I ask about whether or not a plastic surgeon could do it. I don't know how the scheduling works for these port appointments, but I guess it wouldn't hurt to ask, when the time comes.

Medical Oncologist Appointment

After a little wait, a medical assistant took my vitals, and I was taken to an exam room to wait for the medical oncologist who was filling in for my regular oncologist, who was out sick. The substitute doctor was young and friendly.

She asked me generally how I'm doing, so I jumped into two recent concerns I've had. First, a couple weeks ago, I noticed my legs feeling tired and stiff. Literally any and every time I shift my leg position, or stretch them out in any way, I think, "Wow, that feels good, I really needed that." I mean, maybe it's just aging, but it seems a bit much for 43 years old. The doctor said she's about my age, and kind of laughed at the idea of being considered "old". But the only thought she had was that maybe I was feeling some kind of bone or muscle or joint pain from the Lupron.

Also, just within the last few days, when I wake up in the mornings, my hands feel like they've fallen "asleep". That feeling passes after a few minutes, but my fingers feel numb and tingly and "thick" for quite a while longer, sometimes as long as a couple hours. This morning I got so nervous about my wedding ring getting stuck on a swollen finger that I took it off, with difficulty. Once I'm up and moving around, my fingers feel better, but a mild tingliness and "thickness" linger kind of on and off all day. The doctor thought the swelling sounded like fluid retention, again from the Lupron. She also suggested trying a wrist brace, like something used for carpal tunnel syndrome, to see if that helps with the numb and tingly feelings.

(Back at home, a Google search told me that not only is fluid retention a possible side effect of Lupron, but it's also a possible symptom of menopause, which is relevant because Lupron puts me into a chemically-induced menopause. Even more specifically, both swollen fingers and tingling in fingers could be symptoms of menopause.)

While doing my physical exam, the doctor of course noticed the unhealed port incision. I gave her a quick run-down of the history of the incision. To my surprise, she asked if I've considered taking the port out. I told her I had mentioned it to my regular doctor, who didn't think it was a good idea. But this doctor thinks that maybe the port itself, being a foreign object so close to the wound, is what's preventing the incision from healing properly. If I took the port out, I would finish my Herceptin treatments via a regular IV inserted into a vein. She agreed that with 5 lymph nodes removed from my right arm, she would want to be cautious about preventing lymphedema and limit the use of IVs to my left arm. I guess I'll think about it, but my first instinct is to just leave it alone. The port works, after all; it's just an ugly wound.

Finally, the medical oncologist prescribed the exemestane that my regular oncologist and I discussed at my last appointment. She made sure to mention that if the price is outrageous, I shouldn't pay it; I should call the Cancer Center, and they can help figure out a way to get the price down. Apparently, if the prescription has already been picked up and paid for, it's harder for them to manage.

At this point, I figured the appointment was over, but the doctor said she had one more thing to talk about. My regular oncologist is leaving the practice! Ahhhh!!! The substitute doctor said my usual doctor really is out sick (who knows...) but she's also taken another job somewhere else as an in-patient oncologist. Sigh.

She said she could take me on as a patient, and I said that would be fine. From this one appointment, I like her well enough, and I don't know any of the other oncologists at all. Looking back on the appointment, I kind of wish she had led with the possibility of changing doctors because if I had known, I think I would have approached the appointment differently. I definitely would have answered some questions differently. I feel like I was kind of dismissive and not as thorough as I would normally be in some of my answers because I figured, "This substitute doctor doesn't really need to know everything, I'll just give her the gist of it, and catch up my regular oncologist at my next appointment." Oh, well.

At first she said our next appointment would be in 9 weeks. I hesitated a bit; she noticed, and encouraged me to say what was on my mind. I said I've had regular oncology appointments every 2-3 weeks since I started treatment, so having 9 weeks until my next appointment seemed like a long time. Without a thought, she said, "Okay, let's make it 6 weeks." Well, that really made me feel better, that she was so responsive on the spot.

Targeted Therapy Appointment

When I got to the infusion room, the usual medical assistant wasn't at the front desk. I was directed to a bay, and I got myself settled with a warm blanket.

When my infusion nurse came in, the first thing she did was sit down and say that my social worker had told her about my mom. I teared up, and she was very sympathetic. I wasn't really sure how much I wanted to talk about it, so I turned the conversation to how I was sad about losing my medical oncologist. She said she knows the doctor I saw today, and she thinks I'm a good fit with her. She went on to say that she also knows the doctor who is coming in to replace my old oncologist, and she thinks I would be a better fit with the doctor I saw today than with the new doctor. So that was reassuring.

We talked about the future appointments I need to have set up. When she started to confirm that I like my appointments in the middle of the school day, I said, "Well...." and told her about my dad's daily radiation treatments. I said early morning appointments would be better now, so I could get back in time to drive my dad to his appointments. She was immediately sympathetic again, and said she'd do her best to get me appointment times that make my life easier.

I told her about the stiff legs, and the numb and tingly fingers. She didn't have much to say about the legs, but regarding the possibly swollen fingers, she said we should ask my physical therapist to take measurements of both my arms. I guess those baseline measurements she took before will be put to use after all.

My infusion nurse also asked for an update on my port incision. I told her about my interventional radiology appointment, and also about the new medical oncologist's suggestion to remove the port. The infusion nurse took a look at my left arm - confirmed that the whole arm did look puffy - and said it "wouldn't be a breeze" to use my veins directly, but it was doable. She said it's not something that needs to be decided right away; I can think about it for a while, and re-visit the idea later as the weather gets warmer (at which time I may want to wear cooler tops that would expose the incision site).

My physical therapist came in at 12:45, just before I got started on the Herceptin.

Physical Therapy Appointment

My infusion nurse and I got my physical therapist caught up on my numb and tingly fingers. She took measurements on both arms; from my wrist to my shoulder, every 4 cm, she measured the circumference, for a total of 11 measurements on each side. She had a printout of my previous measurements, and wrote down each new measurement alongside the old one; every single measurement was bigger this time.

So we knew for sure that both arms were a bit swollen, but she also wanted to see if one arm was bigger than the other, which would be a sign of lymphedema. She went back to her office to put the numbers into her computer, and she came back to report that my right arm is now 7% bigger than my left arm. That's still within the normal range, not quite the 10% that would indicate possible lymphedema. She said she even called up a colleague who is a lymphedema expert, and they agreed that given my description of the problem, it doesn't sound like lymphedema. Most notably, lymphedema tends to get worse during the day, whereas my swelling starts first thing in the morning, and gets better during the day. She said we'd keep an eye on the swelling, and she'd continue to do measurements.

(Later at home, I realized I never asked anyone what I should do about the fluid retention. Google tells me I should drink more water, eat less salt, and keep active.)

The physical therapist also worked on my cording. During this time, she told me how she has a blood condition, and my new medical oncologist is her hematologist. (Hematology/oncology is one combined specialty.) She talked about how much she likes this doctor, and it was definitely reassuring to know that this doctor is someone her colleagues would trust to manage their own care.

The Herceptin infusion finished first, and the infusion nurse let us stay in the bay until we were done. I left at 1:30, making my visit 2 1/2 hours.