The Breast Cancer Diaries, vol. 2, issue 18

When It Rains... or Running the Gauntlet
You know how it feels when you don't know where to begin because there's just been so much going on, and it's a bit overwhelming? That's how I've been feeling when catching up with folks I haven't spoken with/written to in a while. It's very much how I feel writing this BCD entry right now.

There's some catching up, an emergency room visit, and new issues. Told you there was a lot.

No More Cancer Drugs for a While
The last time I wrote a full issue and not just a Quickie for Facebook, I was still on Letrozole. Since then, the side effects had become so painful and/or difficult that they interfered with my being able to keep on with daily living. After I called and spoke with her nurse, Dr. Omene took me off the Letrozole for 2 weeks and told me to call her on July 5 (yesterday). I left a message yesterday, letting her know that I am much improved.

She hasn't yet returned the call, but when she does, I will let her know that I will be taking a break from trying more medications. At least a 6-month break to let my body heal from the 2 surgeries, radiation and its burns, two separate trials of medications that my body couldn't tolerate, and lymphedema. It's been a rough go since last September, and hoo boy could I use a rest.

After stopping the Letrozole, at first, there was little difference. But after a week, I started feeling better. Today, more than 2 weeks later, about 80% of the joint and muscle pain is gone or greatly lessened. There's still issues with my right hip, wrist, and shoulder, and my left thumb. But they are not nearly as bad as they were 3 weeks ago. I did make an appointment to see a local rheumatologist, though because one of the side effects of Letrozole is arthritis/RA.

The hot flashes are much improved. There are far fewer and, for the most part, they pass in about half the time. They aren't as intense, either. If I must, I can sit through one without disrobing or sticking a fan in front of me. They are nearly back to what they were prior to the Letrozole.

I'd been having headaches nearly daily. Last week, I didn't have a headache until Sunday, when the weather changed.

Energy was at a premium. Doing anything was a real struggle, especially sleeping. I might have slept 2-3 hours total between waking frequently from hot flashes and/or the joint pain. It was brutal.

I'm glad that more people don't experience it so badly. Mind you, more than 1/3 of people who take aromatase inhibitors stop due to side effects, so I'm not alone. Still, it doesn't make it any better. I do want to know where all those folks are. It doesn't seem that anyone is doing any studies on how they are doing (Mom looked).

Importantly, I had been sinking into a pretty bad depression. Beyond blue. I hadn't been in a funk like that since 2003. Thankfully, that lifted pretty quickly after stopping Letrozole, and now I'm back to feeling much more like myself.

Lymphie Deb and the ER
A week ago, I had a pretty scary experience. I'd just taken a decent morning walk around the neighborhood and started watering the garden when I had a pain in my left arm that I'd never experienced before. It was swelling and feeling tight from it, moving up my arm from my wrist. I thought I might be having a heart attack. Instead, I was experiencing my first lymphedema swelling in that arm.

The way I experience lymphedema in my breast is very different, so I was completely taken off guard. I knew I was seeing Manasee for physical therapy in a couple of days, so I waited to contact her. In the meantime, I found a YouTube channel created by an oncology physical therapist who specializes in breast cancer and lymphedema. I used some of her methods of lymphatic drainage massage to some success.

When I saw Manasee last Friday, she measured my arm in a handful of places and saw that it was somewhat larger than when I'd started with her. She put in a request to Dr. Hopkins for prescriptions for arm sleeves and compression bras (I hadn't gotten a prescription before I went to Lisa, the fitter, last time.).

She also was very concerned at the speed of my swelling and asked me to call Dr. Omene's office while I was receiving treatment from her. I had it on speaker, and Manasee spoke with the nurse about what was happening and her concerns. The nurse contacted Dr. Omene, and then called me back 40 minutes later, just as I was arriving home from PT.

She said that Dr. Omene wanted me to get to the emergency room right away because I might have a blood clot in my arm, and they needed to check. I hadn't eaten yet that day, so I told her that I was going to have something to eat before leaving for Robert Wood Johnson hospital. I'm glad that I did because I didn't get home from that trip until hours later.

After going through a screening process, I was taken back to a relatively quiet section of the ER (with the exception of a LOT of beeping monitors). I was wheeled to a gurney stationed in front of the nurses' station to wait. It wasn't long before a hospital admissions person walked over, pushing a computer atop a mobile standing desk. She reviewed my information and got me further into the system than the front desk nurse did at the screening area.

Not much later, a doctor came to see why I was there and put in the orders for the Doppler ultrasound procedure. He also put in for blood work, although I'm not sure why, but I guess for a potential blood clot situation, you have to cover your bases.

A nurse came by to take blood. When he inserted the needle into my right hand, he hit a nerve, and I felt as if all the electricity in the room went through my hand and out my pinky. I was in so much pain that I nearly fainted (and I'm not a fainter or someone who can't handle pain).

(Today, I'm still having pain in my right hand, tingling, and pins and needles in my fingers. I will have someone take a look at it because that's not right. Yesterday morning, I could hardly write with a pencil. Today is better, but there's still pain. I've been using Arnica gel very frequently to bring down the swelling and bruising. It has been effective.)

Afterward, I was taken to another part of the hospital to the Vascular Lab for the Doppler ultrasound. There, I was wheeled into a curtained cubicle by a nice tech who told me what she would do. She asked me to remove my shirt (as I had a compression garment on underneath, I was pretty well covered) so that she could take the measurements of my vascular activity and check out the state of my veins and arteries in both arms, around my shoulders, and under my arms.

She pushed pretty hard into my left armpit, and I knew I'd be feeling that later. But, it didn't take longer than about 10-15 minutes to complete the whole test. No blood clots or any other issues, thankfully.

Then, they wheeled my gurney all the way back to the ER, where the waiting began. Well, waiting and panicking because there were two other people on gurneys behind me with no masks. No masks in the ER while our numbers here in Jersey are rising once again. I nearly checked out AMA, and pestered the nurse who jabbed me about my blood test results. Eventually they came (everything was fine), and the doctor released me.

I'm glad my medical team was cautious, but now my hand really hurts, and I'm concerned that there may be permanent nerve damage.

The last bit about lymphedema -- heat and humidity makes it worse. I am counting down the days until fall.

The Burns
While recuperating from these events over the weekend, the burns flared up (when it rains...). I'd been using compression often because the burned area was doing really well. (Oh, the hope!)

I guess it was only a matter of time because Sunday night, it started getting itchy, red, and bumpy as it does at the beginning of a flare up. Continuing the tacrolimus, I waited until Monday to restart clobetasol because it really does a number on my skin, but it has brought down the bumps and gave me some relief. I'm going to return to the tacrolimus to prevent the big, painful peel that happens with clobetasol. Fun.

Lightning Strikes Again
So, this morning, Lefty must have been feeling left out because I awoke to feeling lightning strikes in my breast again. It's been months since these pains! This time, they were only in one spot under my breast, where radiation scar tissue is located. When pressing in the area, it feels like a horizontally oblong lump about an inch long. There are a couple of these in the inframmamary fold, along the underside of the breast, under the burned tissue.

When I went to see Manasee today at noon, she called the pains "zingers," which is a lot less cumbersome than saying "lightning strikes," and expresses the sentiment pretty well. I had been having them throughout the morning. I felt a couple while she was doing her manual lymphatic drainage massage.

She told me that I need to massage my scars, both in the armpit and along the side of the breast. The scars are tightening everything up, which may be causing the zingers. I had been doing it, but when I had to switch up exercises, I forgot to continue. Suffice to say, when I arrived home today, I wrote myself a note on the lymphatic drainage exercises sheet that Manasee gave me last week after the whole arm swelling debacle.

I definitely feel as if I've been running the gauntlet. Thankfully, I'm not in the same emotional space I was a couple of weeks ago. I have come to a place of acceptance with the lymphedema and will learn how to wear compression sleeves. At least they won't cause my radiation burns to act up.

It's all been a bit exhausting, frankly. Taking a break from medication side effects is a welcome change. Now, if the rest of my body would get in line, I'll be set.

Thanks everyone for all your kind thoughts, good vibes, hugs, private messages of hope, jokes, adventure days, and love. I always get so much out of your comments and feedback, whether in the Comments section below or privately.

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