Monthly Archives: June 2013

Last minute announcement: The Changing Landscape of Cancer Care

If you are living with cancer and reside in the Boston area and haven’t made plans yet for Saturday the 29th, I’d like to suggest that you attend this free conference provided by the Massachusetts General Hospital Cancer Center. My beloved yoga teacher Jay Gupta is a presenter (yea!), and the entire program looks very interesting. I will be in the audience, so please say hello if you are able to come!

PS:  There will be room for walk-in registration, so don’t hesitate!

FLYER_SurvivorConf_FINAL 2013-page-0

Getting tired of this crap

I had a CT scan on Monday and my review with Dr. Shaw yesterday. It was also to be my ninth round of alimta (four of carboplatin/alimta, followed by maintenance of alimta every three weeks). However, at my last infusion, I told Jen Logan, Dr. Shaw’s wonderful nurse practitioner–that I was ready for a break.

Except for washout periods and brief drug holidays due to extenuating circumstances (liver toxicity and surgery)—I have been in treatment for five straight years now. That’s a long time. And although my current regimen is tolerable, it still comes with a laundry list of possible side effects. To wit, copied from

Alimta Side Effects

“Check with your doctor or nurse immediately if any of the following side effects occur:

More common

  • Black, tarry stools
  • bleeding gums
  • chest pain
  • chills
  • cough
  • fever
  • loss of coordination
  • lower back or side pain
  • painful or difficult urination
  • pains in the chest, groin, or legs, especially calves of the legs
  • pale skin
  • pinpoint red spots on the skin
  • severe headaches of sudden onset
  • shortness of breath
  • sore throat
  • sudden onset of slurred speech
  • sudden vision changes
  • swollen glands
  • troubled breathing
  • ulcers, sores, or white spots in the mouth
  • unusual bleeding or bruising
  • unusual tiredness or weakness

Less common

  • Bloody urine or bloody stools
  • decreased frequency or amount of urine
  • fainting or loss of consciousness
  • fast or irregular breathing
  • increased blood pressure
  • increased thirst
  • itching
  • loss of appetite
  • nausea
  • skin rash
  • swelling of the eyes or eyelids
  • swelling of the face, fingers, or lower legs
  • tightness in the chest or wheezing
  • vomiting
  • weight gain

Incidence not known

  • Blistering, peeling, or loosening of the skin
  • joint or muscle pain
  • pain and redness of the skin in the area of earlier radiation treatment
  • red skin lesions, often with a purple center
  • red, irritated eyes
  • stomach cramps, tenderness, or pain
  • watery diarrhea

Some side effects may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. Also, your health careprofessional may be able to tell you about ways to prevent or reduce some of these side effects. Check with your health care professional if any of the following side effects continue or are bothersome or if you have any questions about them:

More common

  • Burning, tingling, numbness, or pain in the hands, arms, feet, or legs
  • confusion
  • cough or hoarseness
  • decreased urination
  • diarrhea
  • difficulty having a bowel movement (stool)
  • difficulty with moving
  • difficulty with swallowing
  • discouragement
  • dizziness
  • dry mouth
  • feeling sad or empty
  • hair loss
  • headache
  • heartburn
  • increase in heart rate
  • irritability
  • lightheadedness
  • loss of interest or pleasure
  • mood changes
  • muscle aches or cramping
  • muscle stiffness
  • pain or burning in the throat
  • pain produced by swallowing
  • rapid breathing
  • sensation of pins and needles
  • stabbing pain
  • stuffy or runny nose
  • sunken eyes
  • swelling
  • swelling or inflammation of the mouth
  • swollen joints
  • thinning of the hair
  • thirst
  • tiredness
  • trouble concentrating
  • trouble sleeping
  • weight loss
  • wheezing
  • wrinkled skin

Other side effects not listed may also occur in some patients. If you notice any other effects, check with your healthcare professional.”

Not much fun, huh? I’ve personally experienced nausea, diarrhea, constipation. Rather stunning fatigue that lasts for almost two weeks each infusion. Sores in my mouth and other places I’d rather not mention. Creased and dimpled nails on my fingers and toes, hair loss (it is coming in thick on the crown of my head, but is yet sparse everywhere else), and a tongue that feels as if it is scalded. Rheumy, reddened eyes and rapid recession of my gums. Dry mouth, puffy eyes, and wheezing. Bloody nose and sloughing/flaking skin. And although I hoped I might bypass cognitive deficits, it is clear my short term memory is rather shot.

Fortunately, my latest scan showed stability and Dr. Shaw was onboard for at least a short break. I will see her again in a month and we will reassess. In the meantime, I look forward to a steroid/alimta/treatment-free summer. However, before I can truly enjoy myself, I need to resolve a stubborn case of constipation. Thus far an unholy mixture of water, fiber, prune juice, senna, colace, lactulose, glycerin suppositories and even a fleet enema have made but a dent in my problem.

I really just want to be a regular person.

Daddy Day

Dad, Baby Linnea and our neighbors Esther and Don

Dad, Baby Linnea and our neighbors Esther and Don

Peter and I took David out to breakfast this morning at Republic, a cafe in Manchester with truly extraordinary food—something that is not easy to find in this neck of the woods. After we got back home my stepfather Jim called from Utah and I had a chance to wish him a Happy Father’s Day as well.

I’ve been blessed with three different father figures. Jim became part of my family over twenty five years ago, and although we were all grown (in fact, I had two kids of my own by then), he has always considered us his own and we return his love and affection.

In 1985, we lost our first stepfather of sixteen years, known to us (really) as Daddy Dick. He was a character, and upon reflection, not all of his qualities were good ones, but nonetheless, I adored him.

And, of course, our father, Hilding Gunnar Olson, or rather Ollie Olson. He is the handsome fellow in the photo—the tall gentleman who is not sporting a pistol on his belt.

Sadly, dad was diagnosed with stage IV pancreatic cancer a mere four months after my own diagnosis with lung cancer. Despite a poor prognosis, he vowed to fight his disease and traveled to MD Anderson for one memorable (coinciding with Hurricane Rita) round of chemotherapy. Too weak for any further treatment, he passed away on Thanksgiving Day in 2005, his favorite holiday.

I haven’t written much about my father, but I miss him so. My first memory is of handing him a brick:  while studying for a PHD in Mechanical and Nuclear Engineering, he worked as a general contractor to support our family.

Ollie was a quiet and gentle person, who loved to garden and began composting and recycling long before such practices were vogue. He canned his own pickles, pears and peaches and our pantry was always stuffed to the brim. In his later years, he developed an avid interest in art, becoming a prolific painter.

For me, he was not just a father, but a good and easy companion. We shared many interests, and I often find myself saying “you’d really like this dad.” And I’m sure he would.

Leaving Vegas

The morning after our wonderful Thai meal from Lotus of Siam, I was up at 5 am sharp. My brother John helped me down to the lobby with my luggage and we sat and chatted while I waited for the shuttle. John’s been my little brother for almost fifty years now (come August!) and I couldn’t adore him more; saying goodbye is never easy.

The ride to airport was interesting, as the young shuttle driver explained why he had traded life in Hawaii for Las Vegas. He dropped me at the Southwest terminal and after checking my bag I made my way through security. It always takes a few extra minutes, as I request a pat down rather than strolling through the all body scanner. I’ve heard various arguments as to the amount of radiation one is actually subjected to, but as I get spiral CT scans every six weeks, any additional exposure is not welcome.

As we queued up according to the complex algorithm Southwest has devised for boarding (status, an additional ten dollar fee, or how quickly you can reserve a spot twenty four hours prior to departure), I noticed Peter’s orthodontist and his son John (who is the receptionist) in the other B group. “Dr. Beinoras! Hello! Peter lost his retainer!” Funny that; I knew they were on vacation as I’d called the office a week earlier when the retainer first went missing. However, I didn’t expect to run into them in Vegas.

The first leg of the flight was totally uneventful:  I slept. I wasn’t looking forward to a four hour layover in Baltimore, but figured I’d get a crab cake as consolation. However, our flight got in a few minutes early and when I consulted the console, I noticed an earlier flight to my destination in Manchester, NH. I quickly made my way to that gate (they were just about to board) and inquired as to whether or not they might have room for me. A moment later, Dr. Beinoras and and his son John (and wife Sandy) were by my side making the same inquiry.

What happens in Vegas, stays in Vegas

What happens in Vegas, stays in Vegas

As we stood and chatted I got a text message from my brother John, along with a photo. John and Amanda had a later flight than mine, and when John had gone out to the rental car to load their luggage, he noticed something odd. A police report was attached to the rear view mirror, the front end of the car was up on cinder blocks, and somebody had taken two of the wheels. OH Vegas.

I got on the earlier flight without a hitch, but the Beinoras family would have faced a hefty surcharge so they lingered in Baltimore. As I was the second to last person on the plane I took (the dreaded!) middle seat between a young man and an older woman. They were both holding books, and as I glanced at the young man’s I saw that it was titled Inferno. “A little lite reading?” I asked—assuming it was the Inferno, the one by Dante. Ha, the joke was on me. The author was Dan Brown, of The Davinci Code.

Well, it’s good to see a young person reading; just about any form of literature will do. And with that introduction, we were soon talking about everything under the sun. One thing led to another (as it always does in a good conversation). As he described some of his ‘adventures’ I countered with a few tales about my eldest son (no name mentioned). The young man asked me if I knew where Ipswich, Massachusetts was. Oh sure, we’d lived there for eleven years. He said his Grandpa was the police chief. I said I’d probably spoken to him (related to one of my eldest son’s indiscretions).  And then I asked if he knew the harbor master, and the young man said sure, he’s my uncle.

“Your uncle is a hard ass!” I said (he heartily agreed), and I told him how my son and some friends had been seen throwing a traffic barrel into the harbor (by the harbor master), and he’d hauled them off to jail. Well, the young man asked me what my son’s name was, and when I told him he laughed and said, “I know August (my son)”. In fact, they’d likely been coconspirators a time or too. I turned to the older woman and said, “The next time I start gossiping about one of my children on an airplane, I better make certain the person I’m speaking to doesn’t know them!”. It’s a crazy small world sometimes.

Vegas! Lotus of Siam!

I have been dawdling, aka, procrastinating. If I don’t hurry up and write about my brief time in Las Vegas, I shall forget all the salient details.

A night in Vegas was borne of necessity. David thoughtfully made my reservations for this trip but had booked a flight on Sunday morning that left Vegas at 7:30 a.m. If you  subtract the two hours it takes to drive from St. George, Utah to Las Vegas, Nevada—add back an hour (different time zones), and then allow for a six thirty a.m. arrival at the airport, I would have been catching a shuttle at 5 in the morning. If there was one.

Well, my very thoughtful brother John decided this was unacceptable. John and his wife Amanda would be spending Saturday night in Vegas anyway, and he changed their room to a suite with a pullout bed. He even offered to ferry me to the airport in the morning, but the 6 am shuttle was going to be just fine.

That night the three of us went out for a meal that has earned a spot in my top ten ever. And having lived in the Bay Area of California for quite a few years (where fine dining is a given), that’s saying something.

The name of the restaurant was Lotus of Siam. Located in a strip mall, it didn’t look like much from the outside. In fact, if it hadn’t come so highly recommended, I would have expressed a wee bit of concern. All part of the charm. The unimposing facade opened into two large and noisy dining rooms, and the smells wafting through the air were inviting.

Lemon grass, beer and chardonnay

Lemon grass, beer and chardonnay

After a bit of a wait at the bar (where I nursed a sickly sweet lemon grass drink–sans alcohol), we were ushered to a table. Amanda is of Thai and French descent, and well versed in Thai cooking. She is also very picky (girl knows what she likes), so we were eager to see if the food met her high standards.

John and Amanda started with Snowmaiden Sake, which is served cold and unfiltered. As this was Vegas, I had a tiny, tiny bit. Delicious. And then the food: Chicken satay (mind-blowingly good) spicy chicken wings, som thum–a salad made from green papaya, chilis, tomato, and crushed peanuts mixed with lime juice, fish sauce and sugar. Sticky rice, larb (the only dish that was underwhelming), chicken pad thai (sublime), a spicy mango salad with fresh coconut, thom yum koong–a hot sour soup with shrimp, lime juice, lemon grass and straw mushrooms (superb) and chicken panang, with coconut milk, Thai basil and chili–savory sweet and omg delicious. We finished with the freshest coconut ice cream ever.

If my taste buds hadn’t been in such a state of sensual bliss, I might have had the presence of mind to take a photo. As it is, you will just have to close your eyes and imagine. And by the way, Lotus of Siam got Amanda’s seal of approval.

Well, that was our Vegas experience. Next up: leaving Vegas.

One hot mess

Time to make some excuses. It was my intent to have part two of my trip to Utah up days ago. My infusion on Thursday was without incident, and on Friday I checked off the items on a fairly ambitious day-after-chemo list. However, I also cut way back on the dexamethasone (steroid) this time:  two, two, one, none—or, over and out by Friday afternoon. Of course, by Saturday I crashed, and the sudden heat wave simply contributed to an overwhelming sense of torpor. All volition vanished, and I focused what little attention I could muster on replenishing my fluids and following the plot line of The Cloud Atlas (what a long and ridiculous movie). Staying hydrated proved easier than comprehension, and when dinner presented additional challenge—chew, swallow, think, repeat!—I began to wonder if I might have backed off the steroid a little too quickly.

I slept quite soundly Saturday night; for almost twelve straight hours. Of course, that is the upside of my decision to cut back on the dexamethasone. The oppressive heat was a little softer yesterday—the heavy air pushed around by gusts of wind. A glass of iced coconut water in hand, I spent much of the day anchored to the couch directly in front of the blast from an industrial sized fan.

Almost as clean as a newborn baby

Almost as clean as a newborn baby

In the meantime, David has been opening the pool for the season. When he peeled back the heavy green cover on Friday, twelve frogs in various states of decay decoupaged the bottom. A dead amphibian—or even a mouse or vole, is not uncommon as we proceed through the summer, but twelve at once was a new (and somewhat distressing) record. It was going to be necessary to drain two thirds of the water in order to change the bulb in the pool fixture and to redo some caulking. I was in favor of flushing out all of what I now felt to be a bacterial broth, but David was sure that ‘shocking’ the pool would be sufficient (for Centers for Disease Control and Prevention guidelines on what to do when you find a dead animal in your pool, click here. And pay special attention to any raccoons that may have fallen in and drowned while washing their dinner.).

Well, David finally came around to my way of thinking, which was generous of him as he would be doing all of the work this time around. And what a job it has been. Or, as he says, “this is how much I love you”. Which is, I feel, beside the point—and my rather pathetic line anyway. Just ask Pete. When I pulled up to school on Friday and handed him an icy drink from Starbucks, I repeated a version of the same line. Different context, same underlying plea:  I hope you notice the effort I am making on your behalf.

And I do, I really do.

It rained last night and the air has cooled. With the help of an ambien, I enjoyed a second night of sound sleep, troubled only by dreams of a headmaster who would not let me out of the bathtub to attend recess. A little hungover from the ambien, I’ve got one nap under my belt already this morning—it is now time for a second cup of coffee. By this afternoon, I should be ready to tackle Vegas.