April 7, 2009 Today I let myself down.

We left Prescott as usual, early enough to avoid traffic, grab a bite to eat and arrive early for my 6:15 radiation therapy appointment. We never want to be late and mess up everyone's schedule.

When I walked into the waiting room there was a rather frazzled looking woman sitting there alone. I'd seen 5:45 Carol go in so I walked on back and changed into a gown and sat down to wait. On time for a change I think to myself. The woman from the waiting room shows up and changes into a gown. "Hi!" I say flashing my friendly grin. "Are you new?" "I'm usually here in the daytime," she states jerking her head at me and acting very annoyed. She opens a book and resumes marking the pages with her red pen. "What time is your appointment?" I try again. But she dismisses me with a flick of her wrist in my direction, mumbling something about needing to see the doctor "and everything".

6:00 April shows up with her usual smile, gets changed and sits down with me. We catch up a bit. Carol returns complaining she feels like a crispy critter so we discuss skin regimens. No-appointment 'Sally' shakes her long red wig and turns her body away from us, obviously annoyed by all this friendly chatter. We three queens roll our eyes at each other as if to say "who is she?" Carol leaves and April is called in.

A few minutes later, my miserable roommate catches the attention of a technician and asks how much longer. "I've got children at home," she adds. I picture a couple of grade schoolers fending for themselves eating sugared cereal for dinner. "I'll check," the techie says and returns moments later. "10 minutes," she says.

I begin to seethe. It appears I am being bumped by Miss don't-talk-to-me-you-bother-me. It's not right, I say to myself. The 6:15-right-after-April is my time slot. We left home at 2:45 just to be here with room to spare so I don't hold anyone up! She takes a call from her child and makes sure she's doing her Physics homework. Not grade schoolers, I surmise.

I happen to know 6:30 Toby is through with her treatment. Let her have that spot. Right AFTER ME, I think. But no, April returns and "Adrienne" is called. "You're not treating me next," ask? No, says the technician. Adrienne is next. Walking from the room Adrienne spins her head back at me looking not unlike Linda Blair in the Exorcist. "I've waited 2 hours" she spits. "And I have a two hour drive home," I say to her but she's around the corner and I'm left to fume at the unfairness of it all.

I storm out into the waiting room to complain to my husband explaining how this woman, who has missed her morning appointment, has just squeezed me out. He patiently rubs my arm smoothing my rumpled feathers. I'm spewing on about the scheduling in this joint and all the waiting I've done and how dare they give her my time just because she missed her time. Then I add in all honesty, I wouldn't be feeling like this if she hadn't been so cold and rude to me. I haven't yet admitted that I'm behaving in a horribly UNgracious manner, shamefully inflexible and inexcusably witchy.

When it's my turn, there is no apology for keeping ME waiting. I plan to give them the cold shoulder which is actually literal in this meat locker temperature of a treatment room. But I don't last. I make an effort to be friendly.

WHAT ABOUT ME? WHAT ABOUT ME? At once, I'm disgusted and disappointed in my own behavior. What about you Kathleen? God forgive me. What an ungracious shrew I've been. I am so sorry I tell Him. How can I pass the big test of accepting the burden of cancer and fail this little one? You've never liked people who butt in line, I rationalize. Maybe it's my chemo brain fog, I justify. Or maybe it's my sin nature. Please forgive me, I attempt to telepathically say to Adrienne. Perhaps she is a single Mom under tremendous pressure to work, raise her children and deal with cancer.

Thank You, Lord, for forgiveness. Thank You for a fresh chance to do better next time.

April 2, 2009 A Great Day

I am sitting on the back patio of a Sun City West home listening to a symphony of birds - quail, humming birds, doves, starlings - filling the branches of lush trees. The fragrance of orange trees fills the air. This is a senior community. I've never believed in the concept of the separation of age groups in such a permanent way. The idea of no children in the community depresses me. The seniors, I believe, need young people and the young people need seniors. The thought that the sound-of-the-city is ambulance sirens and oxygen-delivery trucks seems too horrible to contemplate. I would not however, I admit to myself, miss the boom boom of rap blaring from young people's cars, keeping beat to their raging hormones.

I'm surprised to hear a rowdy gathering a few patios away in this fenceless community. These older boys are laughing up a storm and they are actually listening to band music! I've never known anyone who listened to band music. I recognize the John Philip Souza piece I played for my son's first grade class. I was a volunteer art docent and even wore a borrowed band uniform to help illustrate the American parade painting I'd brought to share and inspire the boys and girls. We marched around the room with imaginary batons and instruments. Perhaps these are old friends sharing memories of high school band-playing days. I wonder if they're marching around their patio. The foliage is thick enough to conceal them.

The weather is glorious! It's not yet warm enough to drive everyone in to their air conditioned houses. A friend has given us the use of this beautiful home while I finish up the last half of my radiation. It is wonderful to have a place to rest, occasionally sparing us the daily 220 mile round trip drive. It is the first time since last summer I've felt this relaxed. Is there anything more wonderful than spending a day outdoors in perfect weather? There is even a gentle breeze stirring the trees.

This morning we drove for an hour trying to find a place for breakfast, shunning the long line at IHop. We finally found a golf course restaurant with a big "Breakfast served all day" banner stating "open to the public". Knowing golf course restaurants serve good fare at cheap prices, my husband pulled in at the insistence of our growling stomaches. We dined on yummy biscuits and gravy and bad coffee, and were grateful for both. There was a time when I would have insisted we drive farther and try to find the perfect little cafe but I've mellowed. It's a lot less stressful to go with the flow. Watching golfers come and go, we found ourselves dreaming of the day we'll be able to step back onto a golf course together. But either I wait for my new breasts or learn an new swing to fit my temporary body. My prosthetics breasts aren't exactly stationary. Besides, the muscle connecting my right chest to my arm isn't up to the contortions a back swing requires. We don't mention the added constraints our budget imposes. It's nice to dream.

Last night's treatment was hard. There was a new tech and she wasn't able to position me as she needed to. My right arm fits in a two piece arm rest over my head. It was angled in a way that caused extreme discomfort and seemed to me to be different than usual. Now, I think to myself, I understand the torture of being drawn and quartered. My fifteen minute treatment went forty-five minutes and still failed to get the two xrays they wanted. She is sweet but I was frustrated and let my claustrophobia get to me when she abandoned me in the closed room way longer than I'm used to.

"Hello!" I call. "Anyone there?" "Helloooo! Allison!!!!" I sit up and discover I am four feet off the ground. I'd never realized the table I lay on lifted so high. This explains the smaller technicians straining to replace the tailored "lens" equipment and peering over the table to verify my tattoo points. By now, I am acutely aware of the other moves of this massive Varian Linear Accelerator specific to my treatment. I'm familiar with the beeping and whirring and buzzing sounds and red and green lights. How could I be unaware of my elevated state? I lay back and picture my sheet draped bed lifted by the telepathic thoughts of a magician. Chemo fog hasn't fully lifted, I conclude.

Turns out the technician was off getting advice on my case from the on-call doctor mysteriously squirreled away somewhere in this building. When she re enters she tells me we will give up trying for xrays tonight and hope my muscle relaxes for the next session. Apparently, it's not uncommon for muscles to tighten up from the radiation. She gave me some stretching exercises and I give some serious thought to skipping the next treatment.

I've decided what I am overhearing is a boisterous card party - a friendly game, I decide, with a wife supplying snacks and encouragement. I'm a hopeless eaves dropper. The sun lulls me to slumber. When, I wonder, is the last time I spent an entire afternoon outdoors in such a peaceful setting? What a great day! God is on His throne and all is right with the world.

March 21, 2009 A Band of Sisters

Every evening, five days a week I climb onto a narrow sheet-draped table and subject my right torso to four separate beams of radiation angled just so to attack any remnants of breast cancer lurking in corners. By the third day it becomes old hat.

We arrive at 5:45PM for my 6:15PM appointment. We are very glad for this time slot which allows us to work until 2 ish then drive to Phoenix, grab something to eat, get treated and head back.

Every few days they seem to get backed up and I've waited as long as an hour and a half. The back up of back-to-back patients affords me the opportunity to meet a few more patients aka "victims" or "survivors". Noone complains about the back-up. We are comforted by our sheer numbers and by the chance to compare pains and burns and skin care remedies.

When I first meet 6 o'clock Margaret she has 3 remaining sessions. Her short blond wig sits slightly askew on her head in need of a good combing. She has strong opinions and a shrill delivery advising all to pursue Tai Chi, read Paul Coelho, ignore any diet restrictions and forgo the follow-up drug regime our doctors want us to do following radiation. She means well. She is a psychiatric nurse and speaks in short clipped statements. Margaret marches in for her turn at radiation before they call for her and returns ordering the next patient, "your turn. I don't wait for them to call me." The sign posted on the wall instructs us to wait until we are called. The ladies smile indulgently.
Margaret's replacement, 6 o'clock April is here today - two 6 o'clock patients -no wonder we are late. April's smile is sweet. She seems scared, a nervous what-am-I-doing-here look on her face. She says she's fifty but I clearly see a young girl, striving for courage. 6:45 Toby is 40, with the body of a 20-year old, a big smile, false eye lashes and a cute long blonde wig. She's dealing with her cancer, and trying to get back together with an old boyfriend. She's a candidate for the radiation seeds so I'm not quite sure why she's here.

5:45 Michelle is still here. She is the 35-year old mother of a 2 and 5 year old. She's Hers2 positive which I don't fully understand except that I know the miracle drug Herceptin promises great hope for her. She has a year of chemo with this drug beyond the common treatment most of us have had.

7:00 Monique is big, bold and sassy and it's instantly clear she has a heart of gold. 45, bald, in a baseball cap, she share that hers is inflammatory breast cancer, scary because this is the mother-of-all breast cancers, very fast-growing. It is evident that she has taken Toby under her wing as she advises her to forget the boyfriend and concentrate on getting well. She tells me later that her fiance, her faithful Robert who sits in the waiting room with my husband, has an inoperable brain tumor. They are strong together.

A patient returns from the treatment room and changes. She emerges with a question, "anyone here triple negative"? Michelle answers "No, but I have a friend who is. She's doing well". This statuesque 67-year old is just finishing her 3rd round of radiation after 3 rounds of chemo. After she leaves Michelle explains. If you test estrogen, progestrin or Hers2 positive - you're in luck. There are drugs to treat you. Triple negative - nothing works. Now I understand why they told me "you're estrogen and progestrin positive - that's a good thing".

My claim to fame seems to be that I'm the only one among us who elected a bilateral mastectomy. Most have had lumpectomies. I'm not unhappy with my decision.

6:30 Jan is 79. She is trim and spry. Her doctor in Wisconsin sent her here to see the best, Dr. Kuske. She was diagnosed three months after her husband of 60 years died. He, she tells me, was in a wheelchair from polio for 62 years. I do the math. "So you married him when he was already in a wheelchair?" I ask. "I'd knew lots of boys," she says. "He was the special one." It's obvious, so is she. She has been staying in her brother's guest casita. Every morning she gets up, goes into the house, grabs a cup of coffee and climbs into bed with her brother and sister-in-law, who are having their coffee, and they talk. Picturing this makes me smile. Jan is having her last treatment. 6 o'clock Margaret talked her out of the oral chemo follow-up. She says this treatment has taken the stuffing out of her.

I am warmly greeted by at least one of these women every day. I look around and realize I am in good company. I'm glad to be a part of this club I never wanted to join. My husband calls us a band of sisters.

March 5, 2009 Dry Run

My husband and I sit in the waiting room – waiting. I laugh as I ponder this. More accurately we are being kept waiting. We always arrive early so we won’t be late. Okay, now this is really amusing me. Finally, at 12:20, I am called for my 11;45 appointment for which we arrived at 11:30. “Are you ready?” the assistant asks. “Oh, I’ve been ready for a while,” I say a bit sarcastically and immediately I regret it noting her tired eyes. (Sarcasm – the cutting of flesh – I’m sorry). They open at 4AM.


My husband tries to accompany me. The front desk girl told us he could, but this nurse seems unsure, too tired to decide actually. After a long hesitation she reluctantly allows him to follow us. I’m led to the women’s dressing area to change and he takes a seat. A female patient regurns from treatment, notes my husband’s presence and comments “men in the women’s dressing area? I guess there are curtains,” and she ducks into a changing room. When she emerges, he admires her coif. “Looks familiar,” he says. “Who knew I was a curly grayhead?” she replies. We are one big family – this breast cancer club.



The radiology technician, a sweet young black woman named Marjorie, comes for me and leads us to the treatment room where a large intimidating machine fills the space. We meet Alex, a stunning Indian woman 8 months pregnant, and Raphael, a young Hispanic man. Besides their youth, all in their late twenties, I notice something else they have in common. They are all the same height, till I notice Alex who, despite her condition, is wearing heels! Chunky, not spikes, I note with relief. They briefly explain the plan and then, much to his disappointment, ask my husband to leave. “It’s too distracting for us,” Alex says.



I’m told to stretch my right arm because, once positioned, I will have to hold very still. I’m unconcerned, confident in my limberness. I am asked to lie down on the table, my head held in an armrest of sorts. I’m perfectly comfortable although they fuss over this for several minutes making sure. Then they position my left arm at my side which doesn’t really fit on the narrow table. A good amount of time is spent and I end up anchoring my hand under my hip comfortably. They keep reminding me that I will need to lie perfectly still for a long time. They’ve allowed an hour. This is your long appointment, they remind me. I think back to 5 hour chemo sessions. But here I have to lie still.



I make a few comments but they ignore me. They are intent on their measurements. One measures, two confirm, one writes it down repeating the numbers. Alex draws and writes on my exposed torso. She calls for her instuments, “purple”, “green”. The ink colors differentiate the 5 fields they will radiate. They are using the data from last week’s CAT scan, determining the angles which will avoid my heart and minimize exposure to my right luyng. The bed is moved under the giant arm of the machine. They are careful to explain to me what to expect – clicking, whirring, the bed jerking positions. Then they exit, telling me they can see and hear me the whole time.



I concentrate on being still. “Be still and know that I am God.” Once, when I was going through a difficult time of deep sorrow and heartache for my son, a counsellor challenged me to be still, doing absolutely nothing for one hour, just listening to music. I sat in our glider on the deck. It was peaceful and warm, Aaron Copland’s “Appalachian Spring” playing. My eyese were closed. But the music yanked and tugged until it pulled from my heart precious memories of rocking my babies to this music and I was overcome with melancholy. I’m not good at being still.



I’m better at distracting myself. I recite scripture for a while and then move to poems. I found this one untitled in our parking garage in Honolulu. It was also unsigned, handwritten on a piece of ruled paper. I was quickly intrigued and put it to memory:



“Isn’t it funny how princes and kings

And clowns who caper in sawdust rings,

And simple folk like you and me

Are builders of eternity.



And each is given a set of tools,

A block of stone, a book of rules,

And each must build ‘ere the time has flown

A stumbling block or a stepping stone.”



My right hand is numb. My team reenters, new lines, more numbers, new xray film positioned. Continuously they confer and discuss the best positions and angles to achieve the numbers they need. “Can I scratch my eye?” I ask. “No,” Alex responds. “It’s freezing in here,” I say from my half naked position. “What’d she say?” asks Alex. Marjorie answers, “she’s cold”. They’re not unsympathetic, just busy. They concentrate on accuracy. I contribute my part – remaining motionless – except for the rapid brain activity. I try to relax but minutes later realize I’m tensed up again from the cold. My right hand is freezing. Marjorie tries to rub it but her hands are cold, too. She enlists Raphael whose warm hands gently massage mine while Alex draws another line in “blue”. Another film place and they leave again. I’m glad Alex’s baby is protected for the deadly rays.



“The sun was shining on the sea,

Shining with all it’s might.

He did his very best to make

The billows smooth and bright,

And this was off because it was

The middle of the night.



The moon was shining sulkily,

Because she thought the sun,

Had got no business to be there,

After the day was done.

“It’s very rude of hime,” she said

“To come and spoil the fun.”………



I run through the rest of this Lewis Carrol poem I memorized in college while I waited for my roommates to finish their finals.



“Once upon a midnight dreary,

While I pondered weak and weary,

Over many a quaint and curious

Volume of forgotten lore.



While I nodded nearly napping,

Suddenly there came a tapping,

As of someone gently rapping,

Rapping at my chanmber door……….”



The Raven, always a favorite.



The three techies return. “How much longer?” I ask, a child on a long journey.

“15 minutes,” says Raphael. But for these last minutes they stay with me and are suddenly warm and friendly. The last measurement seems unattainable without the machine crushing my ribs. They are trying to achieve “100” whatever that means. They confer and decide to consult a physicist on staff. Alex disappears and returns victorious. “Reset to 103,” she says and they all cheer. Perfect. We are done.

February 23, 2009 CAT scan

February 23, CAT scan

I've never had a CAT scan and am not sure what to expect. It can't be any worse than a Pet Scan or a Muga scan. We wait a long time in this new waiting room. 5 other women are waiting in varying states of baldness and I try to imagine their stories. This location is temporarily accomodating Dr. Kuske's patients, whose equipment is not yet ready in his new location. I am meeting him here.

Finally I am taken back by a very sweet technician. Shoyei cannot accompany me and this is very hard for him. While we wait for the doctor to arrive I share my concern with the technician about scheduling the 5-day-a-week treatments. She informs me that as of today's scedule, the two available daily treatment times are 5:15AM and 10:15PM. This news sends my mind scrambling for a plan to deal with this unexpected scenario. I conclude this isn't going to work well at all. The technician assures me they will "work with me" since I'm driving from Prescott.

I lay on the "bed" and Dr. Kuske whips out his magic marker. He measures and writes and draws his plan on my chest. While the technician positions me, he tells me he will await the scan and calculate his treatment plan from there. He comments on my flexibility. "Most people can't do that so easily," he says as they place my right arm over my head. This pleases me. My stretching has worked.

He leaves and the technician starts the scan. I've warned her of my claustrophobia not really expecting any. This machine is not so intimidating. However, my trusty overactive imagination manages to make this five minute scan a trapped-at-the-bottom-of-a-well experience and I politely call to her through the intercom that I need to get out. "Hang in there, almost done, almost done." She repeats this for a minute or two and then I am done. I'm done and embarassed and disappointed in myself all at once. "Irrational fear," I chide myself.

Oh well, another experience under my belt. I won't be afraid next time now that I know what to expect.

Awaiting the next step - a dry run and a tatoo.

February 20, Transitions

The vestiges if my chemo have almost disappeared. The bone pain is gone completely for which I am very grateful. The numbness in my fingers and toes lingers but has lessened this past week.

Today I have my port removed. I won't be needing it anymore. It is outpatient surgery at St. Joe's and requires only a local anesthetic. I'd been put to sleep for its implant by Dr. Corn. Dr. Kato didn't want me to go back to her so Dr. Mosharaffa agreed to remove it. I am so happy to finally have it removed.

For six months it has resided just below my left collar bone, a constant irritant with what I thought was some sort of pin floating just beneath my skin, constantly "poking" me from inside out as if it might push through.

Dr. Mosharaffa is ready for me early. My husband has just returned to the waiting room with my Starbucks, another perk of St. Joe's. The nurse let's me bring it to pre-op while they prep me and ask the dozens of the same questions I've answered a dozen times. Any allergies to latex, any problems with anesthetics? Any complaints? Cancer, I remind them.

I walk into the operating room and climb on the table. Dr. Mosharaffa enters gowned and masked, his beautiful dark eyes exuding warmth. He feels the site with his fingers. "You've got a suture in here," he says sounding surprised.

I am fully draped, my head covered until my thoughtful nurse makes a tent to hold the sheet off my face. The doctor, two nurses and I make small talk throughout the numbing and opening of my inch long port scar.

"There it is. Look at that, they left it in here," says Dr. M and then it gets quiet as he deals with the unexpected impediment to the port removal.

I feel no pain after the few needle pokes to numb me but it's strange to feel the pulling and prodding of someone inside your body. It takes about 10 minutes. Then I am sealed up with surgical glue and lay there another 5 minutes for the glue to dry with the aid of a blower the nurse holds over my wound.

"Look at this," the other nurse says, showing me the suture they'd removed. It is 6 or so inches long.
February 20, Transitions

"It's not wrong to use a fiberglass suture," Dr. M says, pulling his gloves off. "I just don't know why you would or why you wouldn't cut the tail off," He wonders out loud. It is understood we will not reference who did this or her other mistakes.

"Feel this," the nurse says, "sharp as a needle!"

Noone needs to tell me how sharp it is but I feel it anyway. Dr. Corn had tied a knot and left an inch long tail. Six months of this unnecessary thorn in the flesh. They show me the port itself - it looks exactly like it felt - like a flying saucer.

I get up and walk out of surgery. My Starbucks is still warm. The nurses wouldn't think of letting me waste it. They've saved it for me at their station.

Next stop......radiation.

February 14, 2009 From the Chair

Last chemo-welcome words. Has it really been six months since I started? The interruption of surgery stretched it out making it seem like forever. I'm not sure how I feel. I'm glad it's coming to an end and even happier that it has worked so effectively. I know I'm repeating myself but I'm so very grateful for these treatments. I think about the current health care proposals and what the changes might have meant for me. I worry about what it will mean for future patients.

Dr. Kato has granted me a reprieve from the Neulasta shot - the culprit guilty of more than just bone pain. There is also the possibility of heart damage. The high pulse and intense hot flashing are a few of the others. Anyway, the main reason for taking it was to keep my immune system up so I would make it to the next chemo and since this is my last I can forgo it. I just need to be extra cautious about crowds this week. I'm without protection.


I overhear patients share war stories, comparing exhaustion and nausea levels and I marvel that I've had none of it. I hear them discussing how long they've been battling their illness and here I'm expecting to finish up and walk away. One woman is asking each patient their story. The stories are horrible. I keep my nose in a book so she won't ask me. I feel guilty that my story has happy ending and then I think, but there are no guarantees.

I've learned so much about life, about myself. I've especially learned of God's faithfulness in our trials. Amazing! Some of what I've learned:

My imagination greatly exceeds reality.

God is closest in the valleys.

His Peace is Vast.

I cannot live without Hope

My faith is deep and wide.

My church ministers Christ's love in word and deed.

My husband really loves me. He really loves taking care of me. He works tirelessly for me, for us. My love for him is deeper and more comfortable than ever.

My son's voice makes me smile. His prayer requests make me feel useful. There's a connection in our passion for Truth.

All prayer requests keep me useful.

My God-honoring daughter ministers soul comfort to me like no other. I know it's mutual. We are Mama Yama and Little Yama(thanks Josiah!) forever.

My mother loves me sacrificially. She is my mommy in my suffering. I feel at home in her presence.

My sister is a thoughtful gift-giver. She's upbeat, fun and loving. Our bond reaches from our childhood.

My brother is a precious, battle-tested encourager. We are united in our quest to know God better. We have a deep respect for one another.

My cousin is still my eternal sister. We are reunited in the love of our childhood. I cry tears of joy for her.

I have strengthened relationships with three of our step daughters - praise God they all trust in our Lord and we have shared prayers for each other.

My real estate team is a rock of loving support and loyalty.
We are a family of believers bearing one another's burdens, trusting God in all things.

My family of friends, old and new is vast and so dear to me. Encouragers all. I'm shocked at their numbers and feel wealthy beyond measure. Many many are new or renewed.

There are a few special warriors who've done battle with me in the trenches. They humble and strengthen me. They've taught me the power of a praying army.

Many are suffering far worse than I. I will not complain.

Trials produce opportunities.
This is engraved now in my soul.

My Blackberry makes a handy journal.

I love to write. It crystallizes my thoughts and records my life lessons.

One month before I was diagnosed, I asked God to humble me and give me a heart of compassion. He has graciously, tenderly given me just that.