Friday, May 22, 2015

Sleep: Is It Only An Illusion?

Chemotherapy hasn't been nice to my sleep patterns. This week, after the coma-inducing Benedryl wore off, the energizing steroids took over and I was up all night. It's more than annoying. I want to participate with the rest of the world doing the usual morning, noon and night routines, but the drugs won't allow it. So I go to bed at the "usual" time, then wake up three or four hours later ready to get on with the day, which would be fine if the rest of the world were also ready. It's not. So I spend the early hours of the morning checking and answering email, catching up on the news of the day, planning menus and shopping lists, indexing World War II draft records (or marriages in Colorado or wherever), and writing. And then I nap later in the day when I get tired again.

My hubby/hero/caregiver needs seven or eight hours of sleep each night. Normally I can get along with five or six. But not much is normal these days, although I try mightily to make it so. We muddle through.

Normal? What's that? Maybe I should readjust my expectations. Tiredness comes all at once, like a surprise. I'm in the middle of fixing a meal, reading a book, watching Antiques Roadshow, etc. and suddenly I get droopy, as if a two-by-four had been applied to the side of my head, and I find myself unable to continue. Fortunately, nearby daughter or granddaughter can come by and finish the food projects, but the other stuff just has to wait.

Chemo #10 has come and gone. Sweet Nurse daughter-in-law was there with me for a while. She had come directly from the train after her 12-hour shift so she only stayed a short time until I was hooked up for the infusions and then she went home to sleep.

During my chemo respite last week, Colorado Girl came for a few days and we spent time photographing family heirlooms and recording the history of each. I'm grateful that she cares about her family heritage. Her guest room has a display of things she values--grandmothers' teacups and milk glass, grandfather's leather wallet, parents' wedding gifts, etc.--and she has published a guidebook to identify and establish the history of those things that remind her and her children of who they are and where they came from. It was great to have her here. We celebrated all week.

After chemo #11 on May 26 and #12 on June 2, I'll have another scan of some sort to assess where we are, or more specifically, to see where the cancer is, or isn't. Except for the swelling and the topsy-turvy sleep patterns, I'm feeling okay. Lesions are nearly all gone from my left breast, the tumor is much smaller, and the affected glands have softened considerably.

Big event of the week: I was able to go to the book signing at the LDStorymakers conference at the Utah Valley Convention Center downtown, where my books were available at the temporary bookstore. Writers are book junkies, and while sales are nice, the emphasis at that kind of event is on schmoozing. I met someone willing to review my books and talked with writer friends I haven't seen in a while. I saved up my energy for a couple of days, but I found that making the effort to be there was more energizing than steroids.

Wednesday, May 6, 2015

Having a Swell Time

Steroids and antihistamines help to buffer the side effects of chemotherapy, and each time I have a treatment, it begins with the infusion of steroids, Benedryl and Zantac. But there are the side effects of those to deal with too--antihistamines make me groggy and stupid, and steroids make me swell up.

I haven't seen the knuckles in my left hand for two weeks. I'm supposed to be wearing a bracelet that identifies me as the recipient of an implanted port where the chemo infusion goes, but it got so tight I was afraid it would cut off the circulation in my wrist so I took it off.

Due to the medication with Unna Boot wraps on my legs, we're seeing lots of improvement in the cellulitis. Because of the swelling, however, the spots that want to weep will do so if we don't keep the compression steady. It's a strategy that's working well. I'll keep getting the wraps until the chemo is finished in June, and then we'll see what happens next.

Chemo #9 is history now. It was a boring visit with the oncologist because I don't have a lot of stuff to report about side effects. Except for the swelling, and the Lasix hasn't really kicked in, so we're taking it another week to see if it'll start working. In fact, it'll be two weeks before I see the doctor again because next week is a "bye," and with no "game" I'm turning my attention to other things.

I have a dentist appointment next week--no mouth sores, but lots of dry mouth, and that can do bad things to the teeth. Colorado Girl is coming for a few days, so there will be some serious playing to do, and I'm walking around without careening off walls, which means I'll want to get out more and go places I haven't been for a while.

We have been doing "Sit and Be Fit" senior exercises for the last couple of weeks, and it helps to stretch and build stamina. I also have a mini-massage every week that has definite benefits. When the muscles are worked that way, I can feel cellular activity in my breast. And with all this treatment, the scaly skin and lesions have actually diminished. In fact, the tumor is much smaller and the glands are much softer, and the doctor is doubting now that I'll need surgery.

Looking forward to having a pedicure on Saturday night, my first since I was diagnosed. We'll cut the legs wraps off a couple days early and I'll soak and get pampered. Ahhhh.

Wednesday, April 29, 2015

Having a Swell Time

Chemo treatment #8 went very well, although once I sleep off the Benedryl, the steroids kick in and I'm wide awake most of the night. We have a lot of good markers to be grateful for this week. Even the cellulitis is improving tremendously, but now the dreaded swelling and water retention are taking a turn. In spite of that I did lose a couple of pounds--inexplicable how that happens with all that water filling up my cells. Now I'm on Lasix to draw the water out. Its generic name is Furosemide, and its effects can be furious if you aren't close to a bathroom when the call comes. Not much swelling has gone down, but this is only day one.

A very nice side effect today is that I'm walking around the house very successfully without the walker that has been my constant companion since November--I've referred to it as "going steady." This past week I've had pain in my right leg, mirroring what was in my left leg before, but today it's gone. I haven't tried to leave the house and stroll through a grocery store or other public place (saving that for Friday--Sprouts has some deals on berries) but I'm liking the positive signs.

Monday we went to an accessories store (who knew they had those?!) and got some clip-on flowers and bows to frill up and soften the look of my hats (I have 12 now--hubby refers to me as Bartholomew Cubbins) and it seems to have worked. Hats soften the blow for onlookers, but I really need them to keep my head warm.

Utah Boy and Sweet Nurse are probably going to be moved to Utah Valley by May 11. They've leased their home with an option for purchase and have to vacate by then. So grateful for that. They looked at a rental home in our neighborhood last night and we're hoping it works out. He's having interviews and she has started her new job. Seeing Grandbaby C more often is a good thing. She's getting used to me, funny hats and all, and now I'm even getting smiles and kisses. She likes my house because I have lots of BOOKS and a chair that's just her size, so she's starting to warm up. Nice.

We are making plans for our vacation at the Oregon coast in July. It's going to be fabulous. Started the ball rolling to set up a book signing event while I'm there--hope it works out.

A few days ago I heard from a high school classmate who has been following my blog because she's just been through this same experience. It was great to read her email and get that encouragement. My friend Mindy and her home-schooled daughter Zion, whom I've been tutoring in writing for a couple of years, came by on Sunday with a basket full of berries and a "hug monster" they made for me. So many people showering me with love and kindness! Such a blessing! I can actually feel the prayers and positive vibes coming my way.

Sweet moment from chemo day: looking out the treatment room window and seeing the mini tulip festival in the flower beds by the front door of the hospital. Spring in Utah drops these little kindnesses on us, too, and we breathe deep sighs of appreciation.


Saturday, April 18, 2015

Silence of the Blog

It's been a while since I've posted, but not because I haven't thought about it. Mainly I'm a gifted procrastinator, and not posting is a manifestation of that gift.

Speed. That's what I've been thinking about lately. Pouring molasses in January. Swimming through a vat of Jell-O. Wading knee-deep in applesauce. Striding through a puddle of ketchup. All of that is how I feel when I wake up in the middle of the night and can't go back to sleep, even when I want to. I visit the bathroom first, automatically, sitting and staring, thinking I ought to get up and be finished now, ought to make myself move, ought not to sit there until my legs go to sleep. I think about the things I ought to be doing. But it's so easy just to keep sitting there. Eventually I talk myself into standing, pulling my pants up, washing my hands, and going on with my life. Sometimes it takes a lot of convincing because speed is highly overrated.

How do you pass the time at 2 a.m. when you'd rather be asleep? I have developed a few strategies for wearing myself out so I can go back to sleep. I go online and catch up on the news. I write emails. I index--New York marriage records are my current favorites. (Found a great name this morning--Fairybelle Hooker. Who names their kid that?) I work on a manuscript if my brain is functioning well enough. I try to clean off my desk, an impossible task since I'm creatively sloppy by nature.

This week I didn't have a chemotherapy treatment, but I did consult with the doctor. He's very personable and isn't afraid to get off topic for a few minutes because life events influence health events. We're undergoing a transition in the family with Utah Boy and his Sweet Nurse wife moving to Utah Valley, and she works in a hospital where my doctor might interact with her sometimes.

So far the treatment seems to be working. My left leg is pain free, and I walked into the doctor's office with the assistance of a cane. That's the first time since November I haven't used a walker to get around. Our plan right now is to reassess progress after the next set of three treatments. That means the second week of May I'll have another test--either PET scan or MRI probably--and be free of chemo side effects while Colorado Girl is visiting again for a few days. We'll have a birthday party for Utah Boy that week as well.

Sweet Nurse performed an act of mercy by trimming my toenails this week, and then she buzzed what's left of my hair. Doctor is surprised I haven't lost it all by now. Without a hat, I now look like the denizen of a concentration camp. Maybe I'm not going to be bald. That sometimes happens.

We started doing a TV exercise program called Sit and Be Fit, which is designed for seniors. I actually feel energized by it, but Hubby pulled a hamstring the second time out. Activity is good. It keeps the juices flowing. I've been having mini-massages, too, and that also helps. I can sit in a chair and the therapist can still do her thing.

Antibiotics are slowing down somewhat the cellulitis on my legs. It wasn't as bad this time when I went to get the wraps removed and replaced. We'll see how long that lasts. Those wraps are tight enough to act as the needed compression for the swelling and water retention that I'm now experiencing. In other news, my dermatologist and his assistant, who have been treating the cellulitis since January, both bought copies of both my books to give to their wives for Mothers Day.

And the second book, What Took You So Long, is being advertised in the Deseret Book spring catalog. So get it, read it, and put a review on Amazon, GoodReads, or Deseret Book.

Bottom line: six treatments down, six to go, feeling as well as can be expected. Life is good.

Saturday, April 11, 2015

Halfway Point

Little markers along the way help me assess where I am with my cancer treatment, and every day is a new adventure.

Now that I've had six of the twelve chemotherapy treatments, it's becoming a familiar routine. Check in at the cancer clinic at the hospital, preliminaries with the nurse, get the tube inserted into the port implanted next to my collarbone, have blood drawn, visit with the doctor. We talk about how my week has gone, he looks at the blood test results, determines this week's "cocktail recipe," and infusions begin. It takes 20 or 30 minutes for the benedryl and other fluids to drip, and then the chemo itself takes about an hour.

This week I noticed a lot less pain in my groin area where a spot of cancer had been located. I'm even able to go short distances on my own without the walker that has kept me mobile since last November. I have a lot less arthritis pain in my joints, too.

Unfortunately, the cellulitis on my legs isn't responding to the antibiotics as quickly as I'd like, but my resistance is low. It's slow progress because I'm also experiencing swelling and water retention. This week I'm having issues with cancer-related neuropathy in my feet. That means my feet tingle and hurt and I can't get comfortable for very long when I'm sitting. So I learn to deal with it and tolerate it and feel grateful it's not one of the worse side effects I might be having.

We have started doing a TV exercise program for seniors, "Sit and Be Fit." It's exercises you can do sitting in a chair, or standing behind it while holding on, and it's surprising how many ways you can move your muscles while you're sitting down. It's half an hour that we do on days when we're at home and not otherwise active. Hubby pulled a hamstring muscle (!!!) but I've done well with it.

For my birthday, my kids gave me gift certificates for massages so for the past three weeks I've been taking advantage of that. It's a mini-massage--sitting up since it's so hard for me to move and turn otherwise--but I can actually feel movement in my left breast when my back is massaged, like it's opening pathways for the chemo. And I've noticed that the tightness in my breast is loosening, and the affected glands are softening. It's amazing to feel that difference.

Summary: six treatments down, six to go, and side effects still at a minimum. My hair is almost gone, and I sleep when I'm tired. I keep up with the rest of my normal activities and throw in the daily allowances for cancer. That's my life. It's all about coping.

Tuesday, March 31, 2015

Measuring Progress

Good platelet levels, good blood pressure reading, less pain and more mobility, tolerating chemo with few side effects--evaluating the status quo shows us what we have to cheer about. Of course, we're still dealing with spring allergies, hair loss, gradually increasing fatigue, creeping cellulitis resulting from diminished resistance to infection, swelling in legs and feet, and secondary dry cough due to blood pressure medication. Now we are liking more and more the word "manageable."

It was great to have Colorado Girl and Utah Boy with me at my treatment last week. They helped me in and out of the car, asked the doctor intelligent questions, talked me through the "benedryl buzz," kept me warm with heated blankets, escorted me to the rest room, and anticipated with me our week at the Oregon coast this summer. We are a busy family, we love each other, and we know how to have a good time together, despite disappointments and setbacks, of which we have had a few.

Also during that week, our daughter-in-law Sweet Nurse got a new job at a big hospital in the Metro area, starting April 13, in the--drum roll please--oncology unit. However, it means they have to put their house up for sale and move to Utah Valley right away. Not that we mind having them closer! It's what we've all hoped for, but this is happening suddenly. I'm hoping I'll feel well enough to help them pack, or at least be a cheerleader while other people do it.

Fifth treatment today--seven to go. It went well. Doctor approved dextromethorphan to control my cough, and will consult with dermatologist to determine what antibiotic dosage will best control the spread of cellulitis on my lower legs.

One of my friends at our book club discussion on Saturday told me she had read my new book, What Took You So Long, and she wondered how I could write so convincingly about having breast cancer when I hadn't been through the experience myself. I told her I had done a lot of research, interviewed survivors, and I put myself inside the character, to imagine her experience as she went through it. Most of all, I wanted that character to be a winner. Now I identify with her. I will be a winner, too.

I had a new nurse in the unit today hooking me up to the drip, and it was a chance to tell somebody else about my book, and the irony of real life echoing fictional life. It turns out this nurse is a member of a book club and would like to read my book.

You see? A grandson goes from glasses to contacts, another grandson gets his first paying job, a missionary granddaughter gets a transfer and soon marks the halfway point of her service, we remember the birthday of another grandson who passed away three years ago, we anticipate his parents and sister moving closer to us for new job opportunities, husband tutors, daughter gets a new church calling, book promotions continue, two beautiful eighth-grade granddaughters growing into women anticipate ninth grade next year--Life. Goes. On. That's how we measure progress.

Saturday, March 21, 2015

Hair Today, Hat Tomorrow

Cancer is characterized by fast growth, and cancer-killing drugs are designed to attack cells that grow quickly. Unfortunately, those drugs cannot differentiate between the Good Guys and the Bad Guys. Therefore, fast-growing cells such as hair follicles are victims of side effects. It took a lot of years to make peace with my fine, limp, brown, straight hair, and this is what I get for it--another monkey wrench.

In the last 20 years, I've managed by having frequent perms and weekly attention from a hairdresser. Now that I've had three chemotherapy treatments, I'll soon be back to Square One in developing a hairstyle that works for me.

My hair history is a tale of defiance and rebellion. It laughs demonically at curling irons and readily succumbs to the affects of damp weather. Having been born and raised with the naturally soft water of Western Oregon, I'd never heard of creme rinse. When I went off to school in Utah, my first self-actualized hairdo after washing in hard water was breathtaking, a fact immortalized by my cartoonish finger-in-the-light-socket student ID picture, which landed in that immortal history known as the yearbook. THEN someone told me about conditioner! Ten years later, when we lived on tropical Guam, I surrendered to the only alternative, keeping it very short in what was known then as a pixie cut.

At home I had used natural elements to dry my hair, but at college the Saturday morning ritual of sitting in the sun or in front of the roaring fireplace became impossible. I had to get one of those portable hair dryers with the pliable plastic cap that fit over the curlers so I didn't have to go out in the cold with wet hair.

By the time I had my last child in my mid-30s, gray started creeping in, and over the next 20 years as it developed a mink effect--gray ends with dark roots--my goals became A) not to look like George Washington, and B) not to frighten small children. Fortunately I've found hairdressers who understood how to do that.

My thoughtful daughter, Colorado Girl, found a chemo hat website and had several sent to me. They are delightful and I'm very pleased, especially with the nightcap. Good idea. My friend Bette is handy with the crochet hook and stopped by the other day to have me try on the hat she is making for me.

Not a minute too soon. Hair loss is making itself more obvious. People are used to seeing me nicely coiffed, and I'm used to not worrying much about how my hair looks. Things change with three chemo treatments. A couple of Sundays ago, when I was having an old-fashioned Bad Hair Day, I wore a hat to church, and this week one of my friends said I "really rocked the hat" that day.

This week was my last hair appointment for a while. Quite a lot of hair bailed out while the hairdresser was fixing it so there's no point in curling it anymore. In fact, while I was cooking the other day, I wore a hat to keep hair out of the food.

Thus it begins. Or ends. Some people tell me that when hair grows back after chemo, it sometimes changes in texture and volume from what it was before. Frankly, a year from now I wouldn't mind looking like Little Orphan Annie.

This has been an "off" week, with no chemo so my platelets can build up again, but my two out-of-town children, Colorado Girl and Utah Boy, will act as minions for the Tuesday therapy. They wanted to give Hubby and Provo Girl a break, and I'll be glad to have them here.