Finding my way

Category: Uncategorized

fingers and toes

I had heard of peripheral neuropathy. It was linked in my mind to diabetes and aging. It causes tingling and numbness to feet. I had no idea chemo could cause it, or that it could also affect fingers. I know now. It has been one of the hardest things to deal with. I have chemo induced neuropathy in my hands and feet.

My feet feel strange, like I am walking on lots of little balls of some sort of squishy stuff. I looked and it doesn’t look like I have lots of little puffballs glued to the bottoms of my feet. Those invisible puffballs interfere with my balance, which I find quite irritating. I now use a cane or a walker to prevent falls. Even so, some days I am quite wobbly. The oncologist has ordered physical therapy to help with my walking.

My fingertips tingle and hurt. I don’t have the control over my hands that I once did, a fact that pains me to admit. Now that the “chemo brain” is starting to lift, I am anxious to get back into my sewing and art room. As soon as my energy comes back a little more, I will see what I can do. I am much clumsier in the kitchen than I used to be, dropping and spilling things much more often than I used to. I am afraid the neuropathy will also interfere with my more artistic endeavors.

My fingernails have developed heavy horizontal ridges and an uneven texture. They are quite difficult to clean these days. I don’t know if it’s the fingernails themselves or the ineffective and weak fingers that is causing the problem. I suppose it’s the fingernails because even when I use a brush to clean under my fingernails, they look stained. This hurts my vanity, because I have always loved to have pretty nails. They are anything but pretty now. I do hope they will grow out smooth and nicely shaped like they once were so I can paint them again.

January 2, 2026
chemo is a thief

I am sitting here in the chair, port activated, feet bristling with green topped needles, and hands full of spot needles. Yuxi is such a sweetheart. And so is Kirk, who is the nurse in charge of my treatment today. Later Jamie will come and give me a magic footrub. Everyone here is so kind. They do every little thing to make it easier. Still, though, chemo has stolen so much from me.

It’s hard to say what has been the most difficult to give up. I haven’t driven since I started chemo. My brain doesn’t work the way it used to. I am not at all sure what my response time would be. Independence is a pretty big thing to lose. My stamina is not what it used to be. I look at the cluttered counter and the dirty sink, at the tomatoes on the vine, and I say, later. As I sink into my recliner, I forget. I close my eyes and it all goes away as I drift off to sleep. Drifting off comes at random times, often when I don’t want it. If I find something interesting on TV, I am likely to fall asleep about 15 or 20 minutes in. Mind you, I watch mostly YouTube, so much of what I watch is educational. I must admit to watching plenty of silly stuff too.

When I was growing up, my favorite place was the Idaho Falls Public Library. Summer was heaven when we had swimming lessons. The library was only a couple of blocks from the swimming pool, so Mom would often take us to the library on the way home. I happily read my way through the children’s section downstairs. I didn’t spend much time on the picture books. The chapter books were much more interesting. I was so happy when I was finally allowed to go upstairs and read the grownup books. I found many of the great writers on my own there. I loved to disappear into another world, another time. Chemo has stolen that for now too. I can’t concentrate enough to follow a story line. This, I think has been the hardest thing. After today’s chemo infusion and the next few weeks, I will slowly get it back. And for that I am truly grateful.

October 28, 2025
food

I love food. Normally I eat a nice salad with my dinner every night, as well as a cooked vegetable. I enjoy trying new foods. I love to cook and bake. Typically I shop the perimeter of the grocery store, fresh veggies and meat, some frozen veggies and meat, lots of seasonings. I have made most of our bread, mostly freshly milled whole wheat, for close to 40 years. My beverage of choice for a very long time has been filtered water with no ice. So, yeah, healthy stuff.

Enter chemo. Water tastes terrible. Really awful. And it needs ice. Lots of ice. I don’t care that the mornings are getting downright chilly. Lots of ice. Nothing warm to drink. My mouth burns. I need ice. I need water. At least 64 ounces a day they tell me. That sounded easy before chemo. I’ve been treated three times for dehydration in five weeks. And I try. I get down two cups of electrolytes every day. I switch off between regular and low sodium, low sugar. At least it’s flavored. It tastes better than water. A little bit anyway.

I crave chocolate. Hands down my favorite since chemo is chocolate ice cream. Specifically Frosties from Wendy’s. I made chocolate syrup so I can make chocolate milk to replace it, and it’s ok, but not as good. Even with ice, it’s not the same. Cookies and cake are too sweet. I still have three pieces of my birthday cake in the freezer. Maybe they will taste good in a couple of months. What is it about Frosties? Even the nurses in the chemo unit tell me a Frostie with French fries is a favorite with the patients being treated there. They encourage it because it’s fluid with a little protein and fat.

Food tastes weird. Salads and smoothies and whole wheat bread cause problems. They tell me my whole digestive tract is like my mouth, swollen and irritated. The chemo targets quick growing cells and that’s what your gut is lined with. I have a couple of cookbooks for people with cancer. They looked like a good idea before chemo. Lots of salads, lots of cruciferous veggies, lots of berries. Lots of stuff that is hard to digest. I tolerate smushy veggies, mashed potatoes, soup, a little meat, a little rice, a little oatmeal. And for the next few days, an almost normal diet minus salads and smoothies and whole wheat. Then Tuesday it starts all over again.

October 3, 2025
chemo stinks

Quite literally.

I smell different. I had no energy the other day when I woke up, but I could not stand the smell of my sheets. Such a strange funky smell and I had been noticing it for a couple of days. I stripped the bed and got my sheets, all my nightgowns, and my shower curtain in the wash. To be honest, Richard got the shower curtain down. And Richard hung them all on the line when the washing machine was done. And he made the bed too.

Line dried sheets are one of my favorite little luxuries. They are crisp and smooth and smell like sunshine. Hanging things out to dry is also one of my favorite household tasks. It was hard to lay here on my recliner while he hung them out, but harder still to get up and do it myself. And my bed smelled so good when I got into that night. All fresh and sweet. I slept easily all night.

And then I woke up. The first thing I noticed was the lovely morning light. The second thing was that strange, rank smell, the one I thought we washed away the day before. It was back. In the pillows, in the sheets, in my nightgown. My bath didn’t wash it away either. And my bathroom didn’t smell as fresh as it usually does with a freshly line dried shower curtain. Sigh.

September 26, 2025
chemo. again.

I’m not nervous this time. I know what I’m in for. I just don’t know if it will be worse than last time. Listening to DeBussey; it’s always soothing.

This time I am much more prepared. I remembered my pre chemo meds. I have breakfast and dinner ready for tomorrow and 10 more dinners in the freezer. Plus most of a loaf of raisin bread, all sliced and ready to toast, 2 packages of sourdough pancakes, and a package of Swedish pancakes. A loaf of bread that took a ridiculously long time to proof is finally in the oven. My laundry is all caught up, except for some folding. I didn’t get the mopping or vacuuming done, or the plants watered. I will need small things to do. I have a few balls of yarn and my crochet hooks out. I hope I can be more productive this time, but I am not sure I’m up to vacuuming and mopping.

Thank you all so much for your prayers. They mean more to me than I can say as I head into another payment on uncertaintity.

September 15, 2025
hair

I always envied the Breck girls and their beautiful hair. It was bouncy and full of body and long; perfect hair for a teenage girl in 60’s.

I tried growing my hair out. Since my hair was too fine to tease successfully, it just looked stringy when it was long. Inevitably I would cut it short again and wrestle with curlers and Dippity Do and rat tail combs and hairspray. So much hairspray. The cheap stuff. Aqua Net. And still the ratting and teasing fell flat.

My dad always wanted me to have short hair. He grew up in the 20s and 30s. Short hair was a thing then. Long hair was old fashioned, and for him it remained old fashioned. He didn’t care much for Ali McGraw. Or Olivia Hussey or the Mamas and the Papas. He just wanted me to have short hair; so there was always tension around my hair.

Almost every guy I dated told me I would look better in long hair. It was a thing. Short hair was for our mothers. More tension around my hair. By the time I was married and pregnant, my hair was long enough for a ponytail. I still managed to throw up in it every day. When I got it cut short, it caused more tension, but it did smell better. I almost immediately started growing it out again. Long, short; long, short.

I don’t love my hair. It has been a problem my whole life. It has been a relief to have it gone. If I had known what a relief it would be, I might have shaved it off long ago. I don’t miss it. It is surprising to look in the mirror, though.

September 9, 2025
chain maille

Medieval knights wore armor of chain maille. Many little links of metal intertwined to make a proctective covering. My covering isn’t metal; it isn’t chain links. Instead it is the combined words of prayers and thoughts of love, the well wishes of my family and friends. My soul can rest on the faith and love that I am feeling daily in my life. Since grace is an enabling power, I will be able to walk through the uncertainty of what lies ahead. I feel the love and the prayers and the peace they bring. And I am grateful.

September 3, 2025
packages

Two packages came today.

A beautiful book from my lil sis, Theo of Golden by Allen Levi. It is beautiful to look at and the writing is also beautiful. I nibbled through three chapters. It is beautifully written and I could easily gobble it up. I want it to last.

The other package is head coverings. I have decided against a wig. Except for the long purple one my son in law Marcus ordered for me. Lol. Tonya ordered me some small caps with rosettes for everyday, which are very soft and will be wonderful for around the house or to wear under a scarf. The ones that came today are pretied scarves, a little hat, a snood, and a small lace trimmed cap. My hair has not started falling yet, but my sweet nurse said it will soon. Much sooner than I expected. So I am prepared.

Part of me is wondering why on earth I agreed to let them inject poison into my veins. It does feel like I am being slowly poisoned. They said the third day would be the worst, but the fourth was. So far I have not thrown up but my digestive tract is not happy. I have no appetite. Everything I do manage to swallow just drops like a rock and sits there, heavy on my stomach. With the possible exception of ice cream. It tastes good, is cold and soothing, and settles well. That is more than I can say for most other things I have eaten. Oh, and Tonya’s zucchini bread went down well. It’s strange when unseasoned cooked spinach tastes better than the main course. Lol

The worst part, though, is the fatigue. I did better today. Only a couple of short naps. Friday I slept most of the day. I think my brain is waking up. I hope so. I have missed it.

August 31, 2025
chemo

I am not gonna lie. I was nervous this morning. It went pretty well though. I am very thankful for that, and for my angel nurse, Alejandro. I am not sure of the spelling there. I am feeling OK, just a headache and crazy fatigue. Tomorrow I will get an injection to stimulate the growth of white blood cells in my bone marrow. It will make my back and hips hurt. And Thursday the IV anti nausea meds will wear off. It’s supposed to be the worst day. My brains still feel like scrambled eggs, so it will be good to check in and get my instructions again. Even with a handout of written instructions, I am not quite sure how to handle the anti nausea meds. I am looking at this as a blessing. And I am more thankful than I can express for the love, prayers, and support I am feeling.

August 26th, 2025

August 26, 2025
All is well

Sometimes wishes do come true. At least partly. Prayers breathed out with hopeful air can be answered. The cancer did not disappear, but it also did not spread to my bones or any other place. It is confined to my left breast and six or seven lymph nodes. The plan is to weaken and shrink the tumors with chemo before surgery and then to hit the area with radiation. It is not genetic. Once is enough for this kind of surprise.

“All is well and all is well and all manner of things shall be well.” Dame Julian of Norwich. Funny to think that the visions of a 14th century woman living in rural England are still available to an American woman living in the 21st century. Wisdom knows no bounds and her words are still strong enough for me to rest my soul on.

Chemo starts tomorrow.

August 25, 2025

August 25, 2025