The long and the short

I admit I'm vain, and with all the problems associated with cancer, losing one's hair shouldn't be top priority, BUT it was what really, really bothered me.

For years I'd been a red head using L'Oreal's 66.6.  I liked my hair to cover my face as well.

I was the one who shaved my head, wanting to control my own destiny.

And I did have fun selecting a wig, although I went for one more conventional then the one below.

Because I had a friend whose hair did not grow back, I worried until hair began appearing. Should I go back to my red locks?

I've opted for a whole new look and this weekend, I rolled it out.

Having coffee at the marché I co-opted a friend with really long hair (and she just cut off 18 inches) for a photo of contrasts. The long and the short, hair today, gone tomorrow, the sublime and the ridiculous...call it what you will. I'm happy.

Hair growth

I know of all the things to worry about with cancer, hair should be the least important. Hair does not cause death unless you get it caught in some kind of moving apparatus.

But I am vain. I didn't like being bald. Even my husband's wonderful offer to shave his locks didn't make me like my bald head even more. And if I couldn't have hair, he should have his.

So, when sprouts began to show on my head a few weeks after chemo ended, I was thrilled. Over the years I wondered what my real color was. And deep down I've always admired and wanted white hair. However, I was too vain to spend months with real color roots and red ends.

Well, my sprouts seem to be gray or white.

And I so appreciated this gift from Swiss friends sort of a pro-voodoo hair preview.

Chocolate--good.

White hair--good

Curly--good

Let's see if my head will match the gift.

Fuzzy Wuzzy

rch 18, 2016

fuzzy wuzzy

Fuzzy Wuzzy was a bear

Fuzzy Wuzzy had no hair

Fuzzy Wuzzy wasn't fuzzy was he?

I admit it. 

I'm vain. 

One of the hardest things for me about chemo was being bald. Harder than feeling so weak that walking across the room was a challenge. 

Granted I have two lovely wigs which are prettier than my own hair. 

Not having to blow dry my hair did have its advantages, and I tried to think of it as a silver lining, albeit a tarnished silver one.

People tell me my hair will grow back better than before, but still the image of one friend whose hair did not grow back haunted my 3 a.m. nightmares.

Now I have fuzz on my head. Not a lot, but fuzz nevertheless. Rick can call me Fuzzy even if it is too early to worry about an increased household budget item for shampoo.

Radiation and humor

The radiation treatment I am undergoing involves special heat lamps trained on my chest which is alleged to lure any microscopic cancer cells to my chest then once they are there they will be attacked with short shots of radiation.

For 45 minutes I lie there, delightfully warm listening to the machine click off whenever my skin reaches 41°C and on again when it is drops below.

The doctor is in the room with me. I was so worried he would be a stuffy Swiss German who spoke n English, no French. He is fluent in both along with five other languages and two more where he is functional.

He's anything but stuffy. We chat off and on about the treatment, languages, books, art and music. He has a delightful giggle.

Last treatment he told me a joke after I asked him if he understood the expression "piece of cake" which is how I think of the treatments especially compared to chemo. We tested each other on different expressions...then he told me a joke.

A Brit, a Frenchman and a Czech went hunting in Canada during the winter even though the RCMP had warned them how dangerous it was.

The hunters didn't return and the Mounties started a hunt. They came across footprints in the snow leading to a cave where they saw a female bear with an extended stomach far too big to be just carrying baby bears. They killed the bear and cut her open and found the Brit and the Frenchman.

"Let's keep looking. There may be another bear that got the Czech," Mountie 1 said to the other.

"I'm not so sure," said Mountie 2.

They kept searching and found more footprints, another cave and another fat bear only this was a male. They killed that bear too.

When they cut him open they found the remains of the Czech.

"I told you the Czech was in the male," Mountie 1 said to Mountie 2.

Who says radiation can't be fun?

Radioactive dates

Throughout the entire treatment for cancer, I have tried to make the best of whatever.  Sometimes it is easier than other times.

Now at the end of the process, it is getting easier and easier.

I have had to go from Geneva to Bern six times: One consultation, five radiation treatments. It is about 1.5 hours away on the highway, but the train is far nicer because we can read, snooze, relax. We catch the 9:12.

The scenery is beautiful.

Rick calls them our radioactive dates because we get a chance to explore the city as if we were on a date before I'm nuked.

When we arrived on Tuesday a good band was playing Ave Maria and then the William Tell
Overture.

And we visited a museum, had a nice lunch before heading to the hospital.

As always we were on photo safari wherever we go.

Back at the train station we had only a few minutes to catch the train or wait an hour so we couldn't buy one of the great pretzels that are nothing like the kind the supermarkets sell. Next week hopefully on our next radioactive date.

Good bye Dr.M

I said good bye to my surgeon, the woman who operated on my

right breast twice.

She is a beautiful woman, not in the Hollywood glamour sense. Her blond hair, blue eyes and balanced features might make movie town status if she bothered with make up but even without it there is a still a beauty.

What makes her truly beautiful is when she walks into a room she brings with her a sense of calm. The same calm is shown whether bringing good or bad news.

This appointment is one of good news. All my signs, my scar are good.  I won't need to see her again even if I have one breast that still could be chopped off. Neither of us wants that. Better to greet in the street or over a cup of coffee.

I am also saying good bye, because she is leaving HUG and La Maternié where I have received such wonderful care, physically and emotionally and will still have follow up check ups.

She is going to start a new breast cancer clinic in a private hospital, a challenge and change is looking forward to after ten years with HUG.

She explains that she could only do that because of Swiss law. Now the obligatory insurance can be used at public or private hospitals rather than just the public. The public ones like HUG are world class teaching hospitals and many of the private hospitals are also good but before the legal change the required insurance was much more expensive.

"I didn't want to only treat the rich," she said. She wanted to be available to anyone who would need her. "Money isn't that important to me."

I thank her for her care, for her patience when I didn't like what she told me and for everything.

We hug at HUG.

Baldness

It has been six weeks since my last chemo and I had hoped to see more fuzz on my head. 

I do worry about hair regrowth and although people tell me it will be better than before, I do have one friend whose hair never regrew.

Now I have liked having a couple of wigs where I can change my hair length instantly, and it is ever so easy in the morning to towel dry my head instead of blow drying my hair but I STILL WANT HAIR.

Rick called attention to the photo above.

Hmmmm...

If my hair doesn't grow back would that be a solution?

"We could get Pauline to do it. Or Miloud." He was referring to two beloved Argelès artists.

"Or Marco."

Maybe not Marco. Lovely man when sober. Not sure what he would do when he wasn't sober.

Then I realised, although I love the henna design, I don't have to be limited. I could have scenics, portraits, geometric designs.

I did look at the internet for products but I still hope my real hair regrows. At least I have plan B.

http://ashemag.com/art-and-science-of-body-painting/
http://www.ehow.com/how_6817026_make-waterproof-body-paint.html
http://blog.bodyjewelleryshop.com/index.php/colourful-body-paints/

Haikus and radiation

Because of earlier radiation, the 25 nukings were not an option.  Instead they proposed the following.

Go to Bern, about two hours from Geneva. I was a bit worried. My German is bad and my Swiss German worse, but the charming doctor spoke seven languages with English and French being two of them. He was anything but stuffy.

He heats my skin with lamps for 45 mins. Then I get nuked for 28, 35 and 3 seconds. The concept is that if there is a microscopic cancer cell it will move to the heat and a lesser radiation will zap it. In place of the five times a week for five weeks it is one time a week for five weeks.

A piece of cake.

What do I do when I spend 45 mins with my eyes covered and heat lamps aimed at my chest warming my chest for the radiation?

I write haikus in my head. I don't claim they are poetic but they fit the form.

Rain batters the roof
Creating a melody
During my treatment

he machine clicks on
The machine clicks off
Warming my bare chest

The doctor and I
Talk of typewriters and more
It passes the time

Crayon colors my chest
In swirls and other designs
Target radio.

Miro and Calder
That is how my chest looks now
Radiation marks

So much for stereotypes

I had two concerns about radiation in Bern, which is about 2.5 hours from Geneva. Distance wasn't one of them.

1. I have done most of my medical stuff in French. My German, once quite good has descended into shopping German. Sometimes I can get the gist of a conversation, but not enough to deal with treatment details. I have even less understanding of the dialects of Swiss German. My daughter, when she was going to university in Germany would cross the Swiss-German border and often not understand what she was hearing nor would she be understood.

2. I had an image of a stuffy doctor. 

Entering reception, the smiley receptionist with short blond hair said, "Frau Nelson?" before I could say a word and we spoke French until she wanted to practice her  English. Forms were completed quickly.

I waited for the doctor to call me. He appeared: I am not sure of his age, somewhere maybe in his late 40s. He wore jeans under his white coat. "Madame Nelson?" 

Not Frau.

He spoke in French until he heard my accent and switched to English. I don't think he knows the meaning of the word stuffy in any of his three languages (four if you consider Swiss German a separate language). I quickly replaced the idea of stuffy with warm, competent, understanding.

He managed to add two appointments for that afternoon so the first of five weekly treatments could start on the 23rd. Realizing the distance he will schedule the appointments early afternoon. I may just set the alarm for 3 a.m. so I can appreciate not having to get up on treatment days.

He, too, is a history buff which I discovered when he explained that breast cancer had been treated with hot clay in ancient Egypt. That is known because of the hieroglyphics on tombs.

So what will they be doing?

My skin will be warmed to 42° for 45 minutes. Then the areas where the cancers were will be nuked for a few seconds. The heat causes any microscopic cells that might be lingering to come closer to the radiation. In other words they take on a kamikaze trait, which is fine with me. The radiation will be milder and do less damage to me. Instead of 25 nukings.

During the other two appointments, the attendants said they preferred English to French. They decorated me with pretty red designs as markers. I was photographed inside and outside my body.

I am ready for this last step soooo ready. So ready to get back to a normal life.

 

 

Life after chemo

Four weeks ago today I had my last chemo treatment, a killer dose 4x normal strength for many reasons which made sense as the good doctor, Nathalie B, explained it to us.

However, the side effects were a challenge. Exhaustion like I've never experienced sometimes made walking across the room a challenge. 

I never felt sick. If I were in bed, I felt fine, would get up to do all the things running thru my head and have to go back immediately.
The simplest thing was too much.

"This too will pass," became my mantra. I kept repeating other things, over and over in my head. The problem is from the chemo. It could be worse. No wonder I feel tired. I've been poisoned. If the chemicals are making me this useless and if there are any cancer cells hiding anywhere in my body, the poison better find them. I'm a wuss.  
  
The exhaustion mimicked the tides. There would be hours that I felt just normal tired.  

I worry that the feeling won't come back to my hands and feet and remind myself my mouth is no longer numb and my taste buds are no longer on holiday.

I worry that my hair won't grow back. That the first hair reappeared on my chin is little comfort. That my wig blew off solicited little embarrassment. The expression on the faces of the two teenagers standing nearby was worth it. I let Rick photograph my bald head. He wants to do it weekly to track growth.

I did make it to my landlord's for dinner and passed out. Missed dessert. I slept thru the night in the hospital: poor Rick did not.

There would be surges of feeling almost good. We made it to Argelès, which was medicine for my soul. A day didn't go by that some friend didn't drop in. I was able to free-write with my writing mate sitting on my bed.  Sorta like a literary pajama party.

On better hours we made La Noisette for an English breakfast and coffee with friends.

My husband was always there to help me thru the rough parts like walking up stairs and taking a shower.

He made wonderful meals, beautifully presented. Some days he was a short order cook and he brought back my favorite veggies from our local green grocers .  

For me the biggest frustration was being dependent and not doing most of the things I wanted to do. Making my own breakfast or emptying some dishes out of the dishwasher were major victories. 

The meals I would love to cook will have to wait until April when we return as will checking out the gardens as will organizing the things we moved from Geneva. 

I totally lost it over a garbage can and even as I was doing it, the words "idiot, it isn't important," were in my mind. 

Thru out this entire process we've carpe diemed all over the place.

Snuggling while watching Doc Martin or British mystery, making a snow rabbit (use your imagination, we are writers not sculptors) on the stairs outside our door, reading to each other from whatever book or article we think the other would like...these things were/are a reminder of what is good. 

My radiation treatment has been changed from 25 times for five weeks in Geneva to five times once for five weeks in Bern, a bit more than two hours away. Bern is a beautiful city. I want to share it with Rick. 

We have booked into a hotel Monday night before my first appointment on Tuesday. It promises a Frühstück with homemade jam. The rest of the appointments we will go up and back on the same day but we thought the first time should be special in a healthy way.

For the first time since June 2015 we are beginning to plan trips: Normandy to join my college friends leading a tour, Paris to see my Syrian friend and her husband, back to Argelès. Rick is heading for the States, my daughter is coming from Boston. These are things that normal people do. 

I want normal...I sooooooooooo want normal.

toilet seats

For years in the past, present and most likely the future, women complain when men leave the toilet seat up.

I am grateful to Rick's mother for training him to put it down.

But with chemo the roles have been reversed.

My chemo is so toxic that I was told to wash and dry the toilet seat twice after I used it in case I left perspiration on the seat. I wouldn't kill the person who used it next but it wouldn't be good for them either.

Rather than worry about it I started using the rim. And I left the seat up for Rick. When he sits down he puts the seat up for me.

After three days, the nurses said the toxicity will have passed. 

But will our confusion over gender roles and toilet seats?

Never the same

"Life is never the same after you have cancer," J said.

We were in my old bedroom with the woman who will provide my prosthesis and my sexy new underwear.

J was referring to the fact there is a missing breast and sometimes pain in the arm. There is also the niggle that maybe, just maybe somewhere inside the body a nasty little cell will set up housekeeping.

J is right, but life is never the same after lots of things:

• Having a child
• Marrying
• Changing homes, towns, states or countries

The list is endless.

Meanwhile neurotic me won't have the underwear I want immediately because I can't get the sets I want until the new catalogue comes out next month. I really feel uncomfortable if my underpants do not match my bra and I want pretty underwear. It can be cotton or something else, but I want pretty.

Meanwhile I have a plan B on temporary balancing of my chest with my old bras and matching panties.

 
No matter what happens with my underwear, I am not a refugee facing winter in a tent with an uncertain future.

I would add that this is a detail not a problem.

Me and the train

When I was a little girl, my grandmother read this to me many, many times. This little engine was able to bring milk to all the good little boys and girls in the city where another bigger engine had failed.

Never mind that I hated milk, I was impressed that the train kept saying, I think I can, I think I can over and over.

In response to yesterday's post where I admitted being discouraged, someone wrote "You CAN do it"
I don't think I can, I know I can. All without drinking milk.

Helicopter Husband

Helicopter Husband

This is a dueling blog. My version follows

When I first came to Europe to start our relationship, D-L's friends, as well as her daughter, warned me vociferously not to "hover" around Donna-Lane in the manner of a protective boyfriend/fiance/spouse. After all, she had lived on her own for years, decades, and not only was well capable of fending for herself, she has the sort of alpha female personality that tends to do first and communicate later. For the first few months (maybe even now), I was fearful that I would say or do something to offend her independent spirit and she'd send me packing.

Circumstances have changed recently, albeit temporarily. Since July, D-L has been going through chemotherapy treatments following both gallbladder and breast cancer surgery. The chemicals leave her pretty fatigued most days of the week (after a good day or two immediately following a treatment) and most hours of the day. She does well to sit at the computer for maybe an hour before she has to crawl back into bed to rest and ease her shakiness.

I've transitioned from being her toy boy to being the family chef, butler, opener of the heavy door (that sticks halfway) between our bedroom and the bath, and steady hand when walking up a flight of stairs or through the hospital corridor on our twice-weekly visits.

Because she has passed out once and almost a second time from low blood pressure, I am rarely out of earshot or more than a few feet away. Yes, I hover. So a few days ago D-L dubbed me her "helicopter husband." Like a "helicopter parent" who is over-protective of their kid. (I was that too - when my daughter was learning to drive as a teenager, I first took her to a large, empty parking lot. Since the car we had at the time "idled" at about 20 mph, I saw no need for her to touch the gas pedal!)

Donna-Lane vows that once she is through the chemo and the radio, she wants to balance the scales by waiting on me for awhile. I'll settle for turning in my rotor blades and returning to our normal no-hover lifestyle. 

 

Helicopter husband

My mother could have created the manual for the helicopter mom a half a decade before the term was created. I hated being over protected.

Fast backward to three years ago when Rick and I were getting together. My friends who approved of him and actually thought he might be good for me took him aside and said, "Don't smother her. Give her freedom. She's very independent." The underlining message was "Or you'll be history."

My daughter added another message, "And she'll steal your socks."

He believed both. Some of his socks disappeared. He didn't hover.

Then I developed breast cancer. I made sure he attended all my appointments, although in most there was only French spoken and I had to translate. He had said this is a motivation to speed up his learning process. I wanted him to not feel left out.

We went thru the bad news, the good news, the bad news, the good news. They think they got it all. Chemo and radiation would be preventative.

After surgery, I still was able to maintain my full independence. But with chemo, I was less brave. There have been times walking across the room has left me without energy. Doing chores that should be ordinary were/are exhausting. Unloading a dishwasher shouldn't leave me shaking, but it does on the bad days.

He took over.

"You are a helicopter husband," I've told him as he worried about leaving me alone. For whenever I was weak, his blade rotated at full speed making sure I don't faint on him as I did one day.

He didn't deny it. 

Now chemo is almost at an end. Radiation will be tiring but not like this. In a few months I will regain my strength and we will be back to normal. I've promised him that I will do the cooking for months rather than our alternating under our previous arrangement.

"We'll see," he said. 

I hate being dependent, wanting to do stuff but not having the energy. I have learned that it is okay to ask for help, to not always be 100% strong. I have learned that having a hovering, helicopter husband is a good thing when needed.

Because on my good days, when I do feel normal, he lands his helicopter and shuts off the hover mode, I know our lives will resume.

Meanwhile I need a clean pair of socks, and when he isn't looking I'll check out his drawer.

Helicopter husband

My mother could have created the manual for the helicopter mom a half a decade before the term was created. I hated being over protected.

Fast backward to three years ago when Rick and I were getting together. My friends who approved of him and actually thought he might be good for me took him aside and said, "Don't smother her. Give her freedom. She's very independent." The underlining message was "Or you'll be history."

My daughter added another message, "And she'll steal your socks."

He believed both. Some of his socks disappeared. He didn't hover.

Then I developed breast cancer. I made sure he attended all my appointments, although in most there was only French spoken and I had to translate. He had said this is a motivation to speed up his learning process. I wanted him to not feel left out.

We went thru the bad news, the good news, the bad news, the good news. They think they got it all. Chemo and radiation would be preventative.

After surgery, I still was able to maintain my full independence. But with chemo, I was less brave. There have been times walking across the room has left me without energy. Doing chores that should be ordinary were/are exhausting. Unloading a dishwasher shouldn't leave me shaking, but it does on the bad days.

He took over.

"You are a helicopter husband," I've told him as he worried about leaving me alone. For whenever I was weak, his blade rotated at full speed making sure I don't faint on him as I did one day.

He didn't deny it. 

Now chemo is almost at an end. Radiation will be tiring but not like this. In a few months I will regain my strength and we will be back to normal. I've promised him that I will do the cooking for months rather than our alternating under our previous arrangement.

"We'll see," he said. 

I hate being dependent, wanting to do stuff but not having the energy. I have learned that it is okay to ask for help, to not always be 100% strong. I have learned that having a hovering, helicopter husband is a good thing when needed.

Because on my good days, when I do feel normal, he lands his helicopter and shuts off the hover mode, I know our lives will resume.

Meanwhile I need a clean pair of socks, and when he isn't looking I'll check out his drawer. 

It stopped

"Call the coup feu," my landlady said to my complaint that it felt as if my hands were on fire, a reaction to the Taxol chemo treatment.

She wasn't the first. My physio had said the same thing when I had had radiation only none of the burning predicted  happened.

I'd heard that even doctors had recommended a coup feu, a person you telephoned to relieve pain.

After a sleepless night, I did.

She immediately put me thru to her daughter whose English was much worse than my French, but I gave my name, address, birthdate in both languages.

I was handed back to the mother and we spoke French and understood each other without a problem.

She told me to be still.

Nothing but quiet for I don't know how many minutes. I felt my hands cool.

"Call me back if you have more problems," she said.

 When I told my oncologist, she raised her eyebrows. "I don't understand how it works," she says."But I've seen it work in burn units."

I don't understand either. I don't care. My hands are still cool. 

Tuesdays and Thursdays

A guest post by my husband.

Thursdays, lately, have been the best day of the week. Tuesdays have been the worst.

In between, on Wednesdays, Donna-Lane receives her weekly chemo treatment.

By the way, the treatments are almost done. Depending on how the doctors interpret her condition, next Wednesday could be D-L's final chemo. Fingers crossed. It would be what I'm calling a super chemo, the equivalent of 3 or 4 treatments in one - with a different chemical than she has been receiving - and will likely make her very tired for days or even weeks afterward. But it should not have the side effect she is having now of burning hands and numb fingers and toes.

The day after each chemo treatment, Thursdays, tend to be relatively good days. D-L has reasonable energy for much of the day and sometimes into Friday. That may be due in part to the slight dose of cortisone they give her with the chemo drip.

But by Friday afternoon, certainly Saturday, the cortisone is probably worn off because the fatigue catches up with her. She'll be able to sit at her computer and work for maybe an hour or so, but then she hits a wall and needs to crawl into bed and pretend to read, often falling asleep within minutes.

By Tuesday, a week after the chemo treatment and the morning we head to the hospital for the weekly blood test and oncologist consultation, Donna-Lane's energy level is at a low ebb. One time, a few weeks back, she passed out from low blood pressure and we called the paramedics. By the time they arrived, she was back in bed resting, and her vitals were sufficient so there was no need to go to the hospital. This past week, she had the severe light-headed sensation again but fortunately did not pass out.

It was good that Christmas Eve was on a Thursday. We spent a great day in Hermance strolling through the village and along the lake. Christmas morning, Friday, was pretty good too.

Now it's New Year's Eve, a Thursday, and we're hoping to spend it with friends. Maybe not as late as midnight, but that's okay. The new year will arrive whether we're awake to celebrate or not.

It's been a challenging year in several aspects. There have been positive developments - my Permis B, a new job in Geneva for someone very dear to Donna-Lane, a publication date for her new novel (Murder in Schwyz), and during treatments she managed enough energy to finish editing a non-fiction book for a former colleague. Instead of traveling around Europe, we've found joy in driving along the edge of the lake or along a ridge where we can see a panorama of the lake, the city, and the mountains beyond. 

Most important, D-L is beating the cancer ... for the second time. 

We're looking forward to a return to 'normal' in 2016, as if the two of us could ever do 'normal.' Certainly we're eager to spend more time in our other home in Argeles-sur-mer and to seeing, in person, friends we've only been able to keep up with online.