The Breast Cancer Diaries, vol. 2, issue 17

Caveat: You might want to settle in with a nice cup of tea and a cookie. This one is long and detailed.

Almost a Month on Letrozole

It's a milestone and should be marked. In the past two weeks, some side effects have intensified while others have disappeared. First, the good news, the heartburn and nausea are gone. Also gone are the mood swings that I had been dealing with after the oophorectomy. In general, my mood has been much better and very even since having my ovaries out, despite the challenges you'll read about below.

Joint Pain

I thought it would have taken longer for the serious joint pain, but it arrived last week. The worst of it lives in the right hip and shoulder. Starting two days ago, the knuckle of my left thumb has been fairly stiff and has required frequent bending, flexing, and massage to loosen up. I switched back to my left hand for mouse use because the right wrist pain became too much. I'm also feeling it in my elbows and knees. Most days, the pain is greatest early in the morning, especially in the hip and shoulder (no matter which side I'm sleeping on). I make lots of noises getting out of bed. There's cursing involved.

What helps the most is movement. If I'm sitting (for work, etc.), I get up and walk around every 15 minutes, and flex my joints. It's also more comfortable to sit on an exercise ball than in a chair, although I switch them after a few hours. Yes, I do bounce and roll from left to right on the ball to keep from stiffening up.

I keep a grip strengthener for my hands on my desk and in my car. For many years, I've kept one in the car for squeezing during traffic lights and other stops. It's calming and very helpful with any hand-related issues.

Yoga stretches also help, although the hip pain takes a while to ease. The other tricky part is when I'm dealing with a radiation burn flare up, which has been the case for weeks now. More on the flare up later.

Way Too Much on Hot Flashes

The hot flashes are much hotter now and are lasting about 3-5 minutes most times. For a couple of days this week, I documented the time and duration for each flash. Consequently, I can predict some of the times when I'll have them. During the daytime hours, I average 1-2 per hour.

If I have ginger, such as in a ginger soda, that will bring one on almost immediately (but I will not give up ginger because I enjoy it in food, and it calms my stomach like nothing else). Nearly any time I eat, I'll have at least one hot flash. Although, when I'm drinking my cold smoothie (with ginger), I don't have one. Drinking water or anything cold, especially when it starts, helps.

My bestie, Joy, gave me a truly useful gift when I had the oophorectomy -- a fan worn around the neck. It has vents along two arms (it looks a bit like a headset, but horizontal) that send air straight up to cool my neck and head. I keep it downstairs to use when I'm eating at the table or knitting on the sofa. I also have worn it on a walk or two.

While it's very effective at cooling my head, I'm now feeling the hot flashes from my waist up. In fact, about half of the time, that's the sensation -- intensifying heat rolling up my body (the other half of the time, the high heat hits me all at once). The rolling feeling is a bit of a warning and gives me time to turn on a fan or take off a layer of clothing before I heat up in earnest.

I say "layer" because I've had to keep the a/c on higher than ever due to all the hot flashing and the lymphedema (more on that later). All the library/archives cardigans have come in handy, though. Whichever I'm wearing will be taken off and put back on all day and night. It's like having an broken internal thermometer swinging from hot to cold.

If I experience an emotional stressor, I'll have a hot flash. Almost every time I share in a recovery meeting, I have one. It also happens when I'm on work Zoom meetings. Thankfully, I have a pretty powerful fan in my home office blowing cool air when I need it. I'll probably wear out the power switch from turning it off and on, and off again several times an hour.

I have at least 3 hot flashes throughout the night, and they wake me up. I'll turn on the ceiling fan, kick off the sheet and light blanket, and wait it out before trying to resume sleep. Sometimes I can, sometimes I can't get back to sleep.

Otherwise, it's hard to tell if I'm having one when I'm outside walking or if it's just the exertion and ambient heat. I'm much more sensitive to heat than I had been previously (give me a snowstorm any day). I've begun getting out earlier for walks, although sometimes, I'm just so exhausted that I don't get out of bed until 6.

Fatigue

There's my transition to writing about fatigue. Whether it's the Letrozole; still healing from 2 surgeries within six months (it's now 8 months from the lumpectomy and 2 from the ooph); radiation treatment and the burns that don't want to heal; lymphedema; interrupted/little sleep; or, more than likely, all of the above, it's been a real struggle to deal with the fatigue. Some days, I wake up and have loads of energy. I feel like ME again. Then, I crash in the afternoon and evening, or it hits me a day or two later. Then, I'm horizontal for as long as I can be. The hip pain increases when I'm horizontal, though.

Last week, in an effort to retrain my body, I changed to my old work schedule, while working at home: Monday and Wednesday 8-4, Thursday 8-12. I was completely done by the end of the days. I crashed on Friday and Sunday. I'm hoping that my body evens out and gets used to it. This week, it was a bit better, although (more on this later) the radiation burn flare up has been particularly painful and required more care.

The Burns and Lymphedema

Well, there's not a lot to say except that I've had an ongoing flare-up since the last time I wrote one of these BCD entries (May 27). Some days are better than others. Today is not one of those days.

I was back on clobetasol for a two weeks, then tacrolimus, then clobetasol. This week is a tacrolimus week. I've endured yet another big peel. It's red and angry in the inframammary fold these days. Today is one of those days when I feel like I'm on fire under my left breast.

Maybe it's the heat. The burns definitely improve the more I'm on my back exposing the fold to circulating air. Maybe it's the compression to deal with the lymphedema. I'm not sure. But, what works for the burns doesn't work for the lymphedema and vice versa.

Manasee, the physical therapist, told me that hot weather increases lymphedema swelling. She also said it worsens when the burns are bad because there is increased inflammation. As a result, I have to do lighter and less frequent compression to help with the burns. When they look like they are improving, I use more compression. Then, the lymphedema really improves, but the burns flare up harder, usually the following day.

It's frustrating and painful. It's really frustrating because the burns had really been improving. It's a big challenge because compression works well on the lymphedema. There's big pain relief in the left breast and arm, as well as improvements in range of motion in the arm when I'm able to use the tighter compression.

There's also the matter of getting out and walking in the warmer weather. Sweat causes problems with the burns. I try to get out earlier in the day (as I mentioned earlier) to avoid the issue, but sometimes, it's not possible.

Just to circle back to the hot flash discussion. Wearing the compression gear and dealing with hot flashes sucks. It provides an extra layer of insulation. I generally just take it off when the flash happens, and put it back on after it passes. Although, sometimes, it sets off the burns at the same time. In that case, I stop the compression altogether for the day. As Manasee says, some compression is better than no compression.

Closing Thoughts

Sometimes, I don't want to share this kind of detail with you, Dear Reader, because I know it's difficult to read, especially for those who know and love me well. But, if you've been reading along since the beginning, you will remember that I lean heavily on "this too shall pass," or what the Buddhists refer to as "impermanence." It won't always feel this way.

And, sometimes it just sucks until it's done sucking.

Getting out into nature helps. Just going outside my house to look at the garden (and occasionally do a bit of clean up) does wonders for me. Meditation and online recovery meetings are key. Talking with friends and family, and visiting with folks in person go a long way toward taking my mind off my physical self.

As you know, I've been through much worse. Although, I won't lie to you. Sometimes, it's a lot. And, sometimes self-care looks like a plate of nachos and a night of watching "Whose Line Is It Anyway" while knitting.

Thanks everyone for all your kind thoughts, good vibes, hugs, private messages of hope (I'm looking at you, Valerie Messina), jokes, adventure days, and love. It makes my day when people comment on these posts.

Remember to get your screenings, whether mammograms, colonoscopies, or whatever you need. Early detection is key!