4/2/22: More Anastrozole Side Effects

Lately, I've been feeling dizzy. I've always imagined "dizzy spells" to mean: a person feels dizzy while standing, has to sit down, and needs to remain still for a while to let the feeling pass. But what happens with me is, I will be standing still, moving around, or just sitting and eating breakfast - doesn't matter - and suddenly, without warning, I will feel a very brief dizziness, like a "shift" inside my head. It passes quickly. Sometimes that's it, and sometimes it's followed by a few more milder occurrences. Sometimes by many more milder occurrences. "Feeling dizzy" or "dizziness" is listed as a side effect of anastrozole, so I guess that's it.

Also, I'm having trouble sleeping. This is really nothing new; ever since I started cancer treatment, I have to get up multiple times a night because of a hot flash or because I have to pee. But lately, I've had trouble just falling asleep. Even when I'm tired, I will end up tossing and turning for quite a while before dozing off. And I'm definitely feeling more tired during the day than I used to. Both web sites linked above also list "feeling tired" or "unusual tiredness" as a side effect, so maybe it's related. 

Anyway, I've added these two items to my list of concerns for when I next talk to my medical oncology NP. 

2/3/20: Sleeping on My Right Side Helped

I've been sleeping on my back for so long, I honestly forgot that sleeping on my side was an option.

Since my hands feel worst in the mornings, I wondered if sleeping on my back was part of the problem. I've noticed that even when I try to lean back while sitting, or lie down on the couch to rest, any reclining position makes my hands feel worse.

Sleeping on my right side actually did seem to help. I was able to find a kind of natural position for my arms, keeping them mostly straight, and they felt better than when I sleep on my back. Even now, my right arm and hand feel better than my left.

Still, I woke up a couple times because of my hands, and the only way to really get relief is to get up and walk around.

After one waking, going back to bed, I tried sleeping on my left side. My numb and tingly chest makes sleeping on either side a little weird, but the port on my left side makes it feel even weirder. Plus, I couldn't find a comfortable position for my arms. I'll keep trying, though.

Meanwhile, during the day, my hands definitely feel best when I am walking around and being active. But I still suspect that being too active is a factor in the swelling in the first place. So I'm trying to find a balance of keeping active, but not too active.

12/5/19: Cycle 9 Side Effects

Side effects remain consistent, though I've actually been feeling more tired than usual.

I think it's partly because I haven't been exercising as much. My goal is to exercise (usually that means walking) at least 30 minutes a day at least 5 days a week. But last week I didn't walk on my usual days, first because of my port appointment, and then because we were busy with Thanksgiving. This week I skipped a couple days, too. It was too cold and snowy to walk on some days, and I could have used our indoor stationary bike, but I just felt too tired. Or maybe I was unmotivated. I remember my physical therapist telling me that "movement begets movement", especially during chemotherapy, and that the opposite is also true, i.e., being inactive makes you more likely to stay inactive. Anyway, I need to try harder to keep up with my exercising!

I also haven't been sleeping as well, maybe because I haven't been exercising enough. But I've also been waking up warm in the middle of the night. I don't think they're hot flashes, because it's not like I'm sweating or anything. Maybe we just need to adjust the thermostat.

Or maybe it's just all the chemo catching up to me. I really felt like I started this whole business with a pretty good attitude, but I have to say, after 9 weeks of it, and 3 more to go, it's kind of feeling like a slog.

A couple people have asked me if I'm planning to throw an end-of-chemo party. Nope. First, I'm not really a party person. But also, I'm not sure I'll feel like celebrating. Yes, it'll definitely be good to be finished with chemo! But I will still be getting targeted therapy via port infusions every 3 weeks for the rest of a year. Plus I will still have ongoing hormone therapy, including a daily pill, with all its own side effects, starting after chemo ends. And it's not like all my chemo side effects will suddenly disappear; I have read that it can take weeks, in some cases months, to feel "normal" again after chemo ends. The hair alone can take months just to start growing back, and then it'll take even longer to actually grow to a desirable length. The day I can stop wearing hats, maybe that will be a good day to celebrate.

9/30/19: My Port is Uncomfortable

The areas surrounding both port incisions have been so itchy! Figures it started itching after I spoke with the port nurse on Friday. It's calming down, I think, especially the top incision, the more it scabs over. But it's SO hard to not scratch. If I do, the area gets a red, bumpy, rashy look.

Sometimes the uncovered port stings and hurts when my shirt rubs against it. At home, I wear just a camisole that doesn't cover the port. It's not a pretty sight, so I talked to Ken and the kids about it first.

If I have to put on a shirt, sometimes I'll cover the area lightly with a piece of gauze and a bit of medical tape, just to keep the shirt from rubbing against it.

I don't need the wedge pillow anymore when sleeping, but I'm still sleeping flat on my back all the time. It's getting easier to lean towards my right side, but still feels a little funny. The left side is even less comfortable because of the port.

9/25/19: Port Placement

Okay, this port placement surgery was unexpectedly significant!

In my mind, it was just a step on the way to chemo. I didn't really think of it as a surgery in itself.

Mostly it's just a lot more painful than I imagined. The oncology nurse did say that I might want to use any leftover oxycodone, so maybe the pain should not have been a surprise. I think I figured, since I got lucky with a relatively pain-free DMX, maybe I'd get lucky with this port placement too. Boy, was I wrong!!

It's a stinging pain. I took 2 doses of Tylenol (1000 mg), and it helped. I even pulled out my wedge pillow again because it hurt so much to lie flat. It also hurt trying to get up from a lying down position.

Anyway, here's how the procedure went.

Checked into radiology. When I got called, the nurse said that Ken would be more comfortable in the waiting room, so he stayed behind. In retrospect, there was a chair in the prep area, and it would have been nice if Ken could have come in with me.

I was taken to a kind of multi-purpose prep area. The nurse took my vitals and gave me an IV, I think for antibiotics, which she said was just standard procedure.

When I got my sentinel lymph node biopsy, I picked up on inconsistent chatter in Facebook support groups about how you shouldn't get blood drawn, injections, or blood pressure taken using the arm that had lymph nodes removed. Some people said that if you had lymph nodes taken from both sides, you're supposed to use alternate locations, like a leg for blood pressure. Mostly these precautions are meant to prevent lymphedema. I specifically asked both my NP and breast surgeon about these concerns (though it looks like I forgot to mention it in my blog posts...), and they both said that those recommendations are outdated. This informational page from Memorial Sloan Kettering Cancer Center agrees. The only caveat is if you did have lymph nodes taken from both sides, you should "talk with your doctor" about which arm is best for blood draws and injections.

All this to say, since my surgery, I've been careful to get blood drawn and blood pressure taken from my left arm, which had only 1 lymph node removed (compared to my right, which had 5). But for the port placement, I used my right arm again for the first time. I asked for the IV to be put in my left arm, but that meant that during the surgery itself, they used my right arm to monitor my blood pressure. I was a little nervous about it, but it was fine.

Going in, I wanted to ask for the port to be placed on my left side. I figured, since my right side is still bruised and numb, maybe I should give it a break, and spread out the discomfort, especially since I'm right-handed. When talking with the doctor who would perform the surgery, he said ports are usually placed on the right, but maybe 1 in 10 cases he puts it on the left. I wanted to make sure that medically speaking, there weren't any additional risks if I had my port on the left, since it was only comfort that was driving my preference. I wavered, but he reassured me and just said, "Let's put it on the left."

I walked into the operating room and hopped up on the table. Five people busied themselves around me, including the doctor and 2 nurses. I think the other 2 people were imaging technicians.

I lay face up with an IV in my left arm, blood pressure and oxygen being monitored on right arm, and 3 electrodes attached to my torso to monitor my heart. I got oxygen through my nose, and they covered me with surgical drape sheets from the neck down.

The doctor cleaned the area. I felt the painful pinch of the injection of local anesthesia. I had read that some patients get general anesthesia for this procedure, but I was wide awake the whole time. I could feel some pressure and pulling sensations.

I don't know for sure, but I think the surgery lasted maybe half an hour, maybe a bit longer. At one point, the nurse saw something on the heart monitor. She said the catheter part of the port was "tickling" my heart; it was too close, and the doctor would have to reposition it. The doctor asked the technicians for a picture of my heart, then a "live view". He pushed and pulled on the port for a bit, then asked for another picture and live view. He pushed and pulled again, asked again for a picture and live view, and was satisfied.

When the surgery was finished, the nurse went to get Ken so he could sit wtih me until I was cleared to go home.

To place the port, there are actually two incisions, one below the collar bone for the port itself, and one above the collar bone at the base of the neck. Immediately after the procedure, the area was still numb, so I hardly felt any discomfort at all. But a couple hours later, presumably when the local anesthesia wore off, the top incision really hurt!! Even with Tylenol, if I so much as sniffed my nose, it hurt.

By the time I went to bed, both incision sites hurt, especially if anything touched the area.

There is dressing on both the port and the incision above it. I can remove them in 2 days.

9/11/19: (19 Days Post-DMX) I Removed the Wedge Pillow

Last night I slept without the wedge pillow. I had the longest stretch of sleep since surgery!

My abs aren't really strong enough for me to comfortably get up from a lying down position without using my arms, so I had to wait until my arms felt strong enough to support at least some of my body weight.

My chest is still bruised, the area just in front of my underarms are still swollen, and the underside of my right arm, from my armpit almost down to my elbow, is still numb. So, I think it's best to continue sleeping on my back; I'm keeping one or two pillows next to me, to help prevent me from rolling onto my side or stomach.

Physical recovery seems to be progressing slowly but surely. Some days I feel like I'm in a holding pattern, but other days I can see improvement in my range of motion or arm strength.

8/27/19: (4 Days Post-DMX) I Limit Computer Use and Sleep Odd Hours

I occasionally feel a twinge of pain in my right breast area. I assume it's located somewhere along the incision. (I can't tell for sure because I still haven't taken off the surgical bra and compression band...) I actually think it's from over-extending myself on the computer. You don't think that using a mouse would be very taxing, but moving and clicking the mouse seems to strain my right pectoral muscle! After sitting at my computer for a while, I'll get that twinge of pain. It goes away if I just sit still. So if I feel it, I take it as a sign to get off the computer and lie down to rest for a while.

I think I'm getting enough sleep, even though I'm keeping odd hours. Since I'm napping and resting during the day, sometimes I'll wake up in the middle of the night and not feel a need to go back to sleep. I frequently wake up with a dry mouth, feeling very thirsty, and drinking lots of water means I'm waking up to pee more than usual, too. If I can't get back to sleep right away, I might just read or surf the web for a while. I don't have to keep any real schedule during the day at this time, so I figure it's okay.

8/25/19: (2 Days Post-DMX) I'm Settling In

I can't explain it, but I really feel okay. More sore than in pain. I'm still only taking 1000 mg Tylenol every 8 hours. I guess maybe so far I'm 50/50 in and out of bed.

Here is a picture of my set-up, with a comfy new super soft blanket that my friend gave me just before surgery.

The 12" wedge pillow is critical. Without it, I think it would be literally impossible for me to gently lie myself down flat or get up from a flat position without using my arms. Even with the wedge pillow, my abs are getting a serious workout! And my neck is sore, too, maybe from using my neck muscles to help me sit up from a lying down position.

I've got one pillow on each side to prop up my arms.

The two red heart-shaped pillows are underarm mastectomy pillows, another thoughtful gift from my cousin. They are perfect for providing a gentle cushion for my very tender underarms. The area just in front of my armpits, below my collar bone, is pretty swollen, so I'm using cold packs there, and the underarm pillows are great for holding those cold packs in place when I'm lying down.

The squishy dragon pillow turns out to be a perfect chest pillow, where I can rest my cell phone while using it, so my arm doesn't have to hold the weight of the phone, which is not negligible!

The tray (Ken's idea), propped up on a pillow, is where I keep things I want in arm's reach, like my phone, the TV remote, and reading material.

My throat is dry and a bit scratchy. I think because they did stick some kind of tube in my mouth during surgery. The water bottle with straw is essential for drinking while lying down.