The Breast Cancer Diaries, vol. 2, issue 19

The Good News and the Not-Great News

Good news first. When I saw Dr. Busono, the neurologist, on Friday, he tested my right hand for permanent nerve damage (from that blood draw in the emergency room 3 weeks ago). I'd never had a nerve study, but had heard it would hurt. It did, but only for the moments when he was stimulating various nerves in my hand and arm.

Prior to starting, the doc wanted to test my left arm as well. I had to tell him 4 times (FOUR TIMES) that he would not be touching my left arm because I have lymphedema in that arm. He finally got it, and we moved forward with the test.

He had me lie down on a low, padded examination table and attached an array of electrodes to my right arm and hand. He said that my right hand was too cold. (I'd been hot flashing on my short drive over to Princeton and Rutgers Neurology, and had been blasting the A/C.) He asked a nurse to fill a glove with warm water for me to hold to warm my hand. Five minutes later, my hand was warm enough for the test.

He used a device to measure the nerve responses as he activated the electrodes. It felt like painful, little shocks. Then, he used needles similar to acupuncture needles to test the nerves around my hand and arm. The pains were momentary and also felt like needle jabs, then shocks. The only one that really hurt was the one in the fleshy part of my hand between my thumb and index finger.

The good news is that there's no permanent nerve damage, and that over time, my hand will feel better. Currently, my fingers and thumb on my right hand are sore and stiff, and go very tingly when I use the hose (even with the trigger locked on the sprayer) to water the garden, when I'm writing with a pen/pencil, and when I'm holding my phone in my right hand. Also, when I'm driving. It doesn't bother me much when I'm knitting or typing.

The not-great news is that the doctor saw clearly that I have carpal tunnel in my right hand. I need to get a splint. I already have an ergo setup at my desks at home and at work, and have been using a mouse with my left hand for 20 years+. I will learn more about what I need to do to care for this syndrome when I meet up with my neuro nurse in a couple of weeks.

Lymphie Deb and the Burns

Until I receive the lymphedema sleeves that Lisa, the fitter, ordered, I'm wearing Lymphediva sleeves. They are very colorful (at least the ones I ordered) sleeves that look somewhat like arm tattoo sleeves. They provide some compression and fit reasonably well, although the end rolls down a little around my armpit despite the gripper material around the top of the sleeve.

I've been limiting the time I'm wearing compression garments on my breast to avoid another burn flare up. Currently, the burned area is much improved, and I want to keep it that way.

To help with the breast compression, I have been inserting Swell Spot chip pads inside my cotton bras, when I'm wearing them instead of the Hugger or the binder (the garment that looks like a tube top from the 1970s). The chip pads are exactly that. They are pre-formed pads with channels sewn into them to move the lymph fluid away from the swelling. Inside the pads are cut up pieces (chips) of polyurethane foam that massage the tissue to also help drain the fluid. They come in all kinds of shapes and sizes for specific uses, especially after surgery where lymphnodes were removed and swelling has occurred.

I insert mine by the underarm, were the seroma was. That area still experiences swelling, and the chip pads, as well as the binder, work well to move that fluid. However, I have to do some kind of compression every day. Otherwise, lymph builds up, which makes Lefty, my armpit, and left arm hurt.

Notes on Lefty

Speaking of Lefty experiencing pain... I figured out why I was getting the recurrence of the lightning/zingers. I was overstretching the pecs and the lats. Instead of stopping when I felt a gentle stretch (as directed), I kept going. No pain, no gain. Well, I was wrong. Pain = more pain later. I have learned my lesson and have been stretching those muscles properly now. Subsequently, no more zingers.

I continue to try to find the balance between the compression and healing the burns. Other than the obvious reasons, I also go for my first post-lumpectomy 3D mammogram on Tuesday (2 days from today). I'm a bit worried about tearing the skin where the burns are. The clobetosol has thinned my skin in the inframammary fold, and it remains sensitive.

For those who haven't experienced it, the mechanics of mammogram machines is that the bottom plate goes right up against the ribs under the breast (where my burn area is), and the tech pulls the breast as forward as possible, trapping it between the top, plastic plate. Then, the tech squeezes the top plate down further than you think possible and asks you to hold your breath as she goes behind a protective area and takes the image. Then, she raises the plate to free the breast temporarily before turning the whole squeezing mechanism to other, uncomfortable positions for additional views of the breast. It sucks and hurts under normal conditions.

Manasee has warned me that it will suck, and I that will swell up afterward. I'll be bringing my most compressive garment (the binder) to wear after the mammogram.

Regardless of how much it will suck, I have to do it because I can't get an MRI (not even sure insurance would pay for it, if it were an option for me). Really, after all this time reading these posts, it surprises you that I can't get an MRI?

Over the years, I've had a lot of metal inserted into my mouth and jaw. Yes, I know people with extensive dental work get MRIs all the time. Believe me, I tried it before I knew any better. It felt as though my upper jaw was being pulled out of my head. Scared the daylights out of me. Suffice to say, I stopped the procedure.

Yes, I know. It's long been on the ever-growing list of things that make me tough to treat.

Other Topics

After calling Dr. Omene a second time, I spoke with a nurse who asked a few questions and said she'd relay the information to Dr. Omene. I haven't heard from the doctor, but I have a follow up appointment with her in a few weeks. I'm not sure there's all that much to say, except that on the whole, I feel much better off the Letrozole.

I have been working to increase the amount of exercise I'm doing each day to lose (eventually) the weight I gained since I was diagnosed last September. I still walk nearly every morning, either outside before it gets hot or on the treadmill (which I like less. I much prefer the elliptical trainer, which will, hopefully, be repaired and returned to me soon).

I also picked up a set of 2 lb barbells to start building strength back in my arms. Manasee said I have to start small, otherwise face the wrath of lymphedema.

A new addition to the exercise routine is another yoga ball. Besides the one I use at my desk, I also have a larger one. This new one is sized so that I can sit on it and have my legs parallel to the floor. It makes doing different exercises more ergonomic correct. In the evening, after I've done my lymphedema drainage massage and exercises, I also do yoga ball exercises targeted to the core. Again, I am starting slowly to work myself up to more repetitions and harder exercises.

Finally, since I've been feeling better, I'm back to cooking/making most of my own food again (just looking at my FB feed, that's easy to see). My goal is to greatly diminish the amount of processed food in the house. I'd gotten used to a lot of pre-made meals and foods, as well as snacky foods after the surgeries because I just didn't have the energy or interest in cooking for myself the way I typically do.

Now that I have lymphedema, I have to watch all kinds of stuff that I didn't previously. Like salt. Also, now that I'm menopausal, I have to watch my cholesterol. During the month that I was on Letrozole, my cholesterol rose significantly. I'll be tested again in 5 months. My guess is that it will be closer to my normal by then. (My triglycerides are good and my HDLs are high.) While I haven't given up cheese, I've cut way back on how many times and how much I eat of it per week.

I'm still on track to begin returning to work in person in September. It will be partial at first, but I'm really looking forward to being back in the archives and on campus in general. I'll be wearing my KN95, which should help with the dust allergies. It will be especially good to see my colleagues in person once again.

Last, but not least, I made a decision to get out and live my life (more than I have been, and much more like I usually do). I've made plans for two road trips. One small one to visit my dear friend Jane in Erie, PA in September, and the other to have a big adventure driving through New England to Prince Edward Island, Canada with another dear friend, Joy, in October.

Thanks, as ever, to everyone who takes the time to comment on these posts. It means a lot to me that you do. Thanks also for all the kind words, thoughts, prayers, good vibes, funny jokes, love, and gifts. I appreciate all of it.

Don't forget to schedule your screenings. Early detection is key.

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!