March 4, 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 returns 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 gray head?” 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 instruments, “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 lung. 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 eyes 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 x-ray 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 him,” 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 chamber 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

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 accommodating 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 schedule, 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 embarrassed 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 tattoo.

February 20, 2009 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.

"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!"

No one 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.