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.