Symptoms and Side Effects

As I said I would, I called the oncologist and talked to a nurse practitioner. The tinkling (I can’t type tinGling for some reason…) in my arms is probably a side effect of chemo – neuropathy. The joint pain is probably a side effect of the drug I’m taking in the study – Exemestane (very similar to Tamoxifin).

“Do you have any neck or back pain?”

“Yes, but I had back pain before all of this and during a massage this week, the therapist said my left shoulder, upper back and chest is full of knots, very tight.” My natural stance has been to hold my shoulder forward to protect my left side. Yoga and a massage this week have made that side sore, in a good way, stretching those muscles and releasing my shoulder from my breast.

“Hmmm. I’m a little concerned about your neck and back pain, but it does sound muscular, especially since it was bothering you before. Let me look at your chart. Estrogen positive is good. Only in one lymph node is good. Since you have numbness in both arms, that probably means neuropathy. If this was something going on with your bones, numbness would probably be in just one arm.”

“What are the symptoms? Let’s just say it: for bone cancer.”

“Yes, the symptoms are very similar to the side effects of chemo and the medications. Just for peace of mind, we could do a bone scan. I think that’s the thing to do, just to be sure.”

So, for peace of mind, Monday morning I’m going in for a bone scan. I have a dye injected at 9:30 a.m.; then I have 2 ½ hours of free time while the dye makes its way to my bones; then I go back and lie perfectly still for an hour while the scan is done. She sounded apologetic for me having to lie still for an hour in the middle of the day. Couldn’t we all use an hour of lying still in the middle of the day?

A year ago I had the mammogram that found the starburst in my breast. I had my first follow-up mammogram Tuesday, no results yet. I visit my surgeon next Thursday for a follow-up. I have a follow-up visit with my oncologist next week for the study I’m in. I also have my monthly injection to shut down hormones. I’ll be ready for the long weekend.

While I’m guiding my brain to think this is all precautionary, there are moments I’m spinning. For me, the anniversary of the start of all this, and this coming week of doctor’s appointments is reminiscent of past weeks. And for others. Hearing about the Stage 4 breast cancer diagnosis of a young mother this week. Waiting to hear when and where my 2-year-old niece will have a small non-cancerous tumor removed from her pituitary gland. Waiting to see if a new medicine will help release the pressure in Dad’s eye so he will regain clear vision. Knowing a good friend is recovering from a stroke.

Anticipation. Glorious when planning a trip, a special day out, a visit with friends. Agonizing when the plan is out of your immediate control, and even more so when you want to help someone else, but don’t know what you can do.

Staying strong and adding to my pocketful of prayer,

Linda

In a Vein of Honesty

Well, I’ve been reading through old posts, and in the continued vein of honesty – shocking myself on occasion – today I’ll tell you that most days parts of my body hurt like heck. Throughout the night my arms fall asleep. This morning I had ten fat, swollen, aching, tingling sausages connected to the palms of my hands. Two months ago, I twisted and turned my wedding ring and college ring off, seriously wondering if I would have to have my wedding band cut off because my knuckles were so big.

Every morning, I feel like I’m lugging the body of an old woman out of bed. And it’s been like this since the end of February. Now, most noticeably, it’s just my hands and feet. The first ten steps of every day are hobbles. It’s best if I start moving in the morning and keep moving until bed time. At 6 a.m. I still enjoy a cup of coffee first thing, but I can’t hold a pen, especially a nice heavy pen. The curl of my fingers hurts and my fingers immediately fall asleep. Later in the day when I loosen up, it’s better. When I write then, my forearm and hand fall asleep within a couple minutes, but I don’t have as much joint pain. Typing is easier. They still numb up, but it doesn’t hurt like holding a pen.

Last week I ran into a friend who went through chemo a few years ago. After the “you look great”s, I asked, “Do you ever hurt?” “Oh my God, every day.” We have the same thing going on with tingling and joint ache. It feels like a combination of carpal tunnel and arthritis. And we are both happy to be alive. And we just pretty much get on with it. But this afternoon, I’m confessing to my oncologist in Boston. After a brief chat a few weeks ago, my radiation doctor thinks this is a result of chemo. Probably neuropathy: nerve damage. I’ll see what my oncologist thinks.

To regain some strength in mind and body, I started yoga on Friday which feels great, and I hope to do it a couple times a week. I’ve stretched muscles that have been sleeping for many months. I can hold the weight of my body with my arms – down-dog for you yogis. And I can pretend I’m a pigeon – putting one leg out straight behind me, folding the other own cross-legged in front of me, and putting my head on the ground, or as the instructor says, “moving your head towards the floor,” not truly thinking it will reach the floor for most of us. It’s an ugly pigeon, but it’s a pigeon.

My hair is growing but it’s hard to tell how long it is because it is growing back in curls! From the back my hair is just like Mom’s. If you’ve ever tried to grow out bangs, that in-between stage is a cake walk compared to trying to tame hair all over your head. Yesterday I cleaned the garage and the porch. Working up a sweat, the curls turned straight up. This wouldn’t be a haircut of my choice. I’ve thought about creating a little broche to wear on my shirt every day: a little piece of write on/wipe off ceramic with sea glass dangling from it, just to make it look a little bit more like jewelry. Today I would write: Curls in Process – Chemo Ended in February – Cancer’s Gone. While it shouldn’t and doesn’t matter, I kind of want people here at the tire store and yesterday at the grocery store and tonight at T-Ball to know. To know this look isn’t what I consider normal. To know my identity is somewhere floating elusively just out of my grasp. To know that when I walk by a mirror I still don’t see me, but a person recovering from chemo, trying to hurry it up a bit, but having to go with the natural speed.

Enough of that.

The breeze-through Iowa was wonderful. I saw all my immediate family, except my sister’s husband. Coincidentally, I had chats with four cancer survivors, friends and family. I approximated how many survivor years there are in total between the four of them: over 100 years. Now that is exhilarating!

Staying strong,

Linda

Sharp Blades Spinning in Dark Places

When I started college, I went in knowing I would have a big loan to pay when I came out. As part of my financial aid package, I was able to do “work study” – work at the college and sign over the check to help with my tuition. My first job: 6 a.m. shift in the cafeteria scraping dirty dishes before they went into the dishwasher. Farm girl meets garbage disposal.

At home we didn’t throw any food waste in the garbage, nor did we have a garbage disposal. Table scraps went to the dogs and cats waiting outside the door. Vegetable peels and corn husks either went “out back” or to pigs or to cows. Today, I imagine a turkey carcass goes into the field where hopefully a bald eagle swoops down for a snack.

Blades spinning non-stop waiting for remnants to be shoved down the hole through rubbery black teeth. What could be good about blades spinning in a dark place?

At college, I was facing this dark place three days a week. Seeing a bowl of oatmeal come through on the conveyor belts… ugh, the worst. The commercial grade garbage disposal tried to refuse cold, gloppy oatmeal. It threw it back through the rubber flaps toward my face. After a few hits, I made a screen with my hands to stop it from landing in my eyes. I served one tour of duty. I couldn’t face it a second semester, even if it meant paying back a few more hundred dollars when I graduated. I begged to type and to do research for professors my second semester. I was promoted to a gopher for the Political Science department. A cleaner job and more interesting discussions.

Each house we’ve owned has had a garbage disposal. For some reason, it takes me a while to get acclimated to garbage disposals in a new house. How do I know what had passed through there? Are any remnants remaining? At one point my GD phobia was so strong I would recruit Bill to dig stuff out. “There’s something in the garbage disposal,” my voice small, horror show-esque. I can get spoons out easily. We have teaspoons like England, shorter handled than the American version. They can disappear completely into the dark hole. Over the last twenty years, at least 10 – 12 have met there death in there. I hesitate to add that I’ve killed three of those spoons in the last two months. The nylon scrubbers don’t fair too well either.

A few years ago, a friend remodeling his kitchen put in a turbo-charged disposal. After a fish dinner one night, he said, “It can even do fish heads.” Yup, there they go, feeding my fear of putting my hand down there to fish something out. After meeting the turbo disposal, I needed new tools: a flashlight and a knife to use as a kind of tongue depressor to open the black rubber flaps and peer inside.

The angst. Give me a farm dog and a pig.

Linda