Monthly Archives: February 2010

My latest scan/radiology report and my response

This morning I put on the t-shirt that Jemesii had made last year for Mother’s Day.  Call it dressing for success.

On Monday I left the house at 6:45 a.m. for Boston.  In places the highway is bordered by steep rock walls, which in the warmer months shimmer with trickling ground water.  Once winter sets in, the seepage forms thick columns of ice which have the appearance of frozen waterfalls.  Some of these columns are a dirty yellow, others an unearthly turquoise, although most are a glistening white.  The early morning sun was was hitting them at such an angle that they absolutely sparkled.  Sadly, there was also a dead coyote in the median.  Last winter, on a morning where I had to leave the house at 4:30 a.m., another coyote crossed the road at a run in front of my car.  It was dark and I never saw him until he entered the beam of my headlights.  Instinctively, I swerved and braked, but was unable to avoid him.  It was a glancing blow, and he kept moving.  Later I found a small tuft of golden fur wedged in my front bumper.  I was heartsick, but hoped that perhaps he had suffered only bruises.

Traffic was stop and go once I got closer to Boston, and I arrived at the hospital just prior to my 9:30 labs.  An hour later, I had my appointment with Dr. Shaw and we reviewed my latest scans.  I have learned that there is often a significant difference between the way a radiologist’s report reads and my oncologist’s interpretation of the report.  In this case, the hard copy states:  “Increased size of ground glass nodule on image 42, concerning for an enlarging metastasis. Multiple other stable ground glass nodules”.

Alice (Dr. Shaw) pulled up my last two scans for comparison, and explained that the morphology of the nodule they are referring to, although characterized as having previously measured 7 mm and now 11 mm, is actually unchanged as far as scale.  What it has done is consolidate somewhat.  This could indeed mean that my cancer is on the move, but there is still a chance that it is inflammation that we are looking at.  The area where the nodule appears in my lungs is where I once had a great deal of disease, a fact which I suppose could support either scenario. It is a positive sign that the other findings are stable, and that there are no new nodules noted.

So, of course, we talked about the what if.  There are a number of treatment possibilities this time, as a solitary nodule is more manageable than the diffuse disease I had previously.  In the meantime, both Alice and I remain quite optimistic, and I am continuing to hone my life force to a sharp point (hence, today’s outfit).

After my appointment with Dr. Shaw and my trial team, I went out for lunch with my dear friend Melinda.  I had another appointment in the afternoon with my thoracic social worker, Mary Susan.  Melinda ran some errands and we met up again for coffee before we each hit the road.  Rather than heading home to New Hampshire, I drove to Newburyport  for a sleepover with my friend Sadie.  That evening we had tapas and red wine for dinner and caught up on many months of news.  Yesterday we tooled around the shops and went to lunch at Grezzo, a restaurant that prepares vegan and raw food.  I wasn’t sure what to expect, but I ended up being absolutely delighted, as it was one of the tastier meals I have ever had.  Click here for a link to the Grezzo website which also has some information about the raw food concept.

Today I need to pack, as we are planning to leave tomorrow for California.  Of course, the weather may not cooperate, as we’ve supposedly got a big winter nor’easter heading right for us.  The plan is to travel to the Bay area, where we will hang out with good friends Wendy and Cristina, before heading north to Mendocino.  We’ll end our California sojurn with a quick stop in San Francisco and a visit with my friend Kate and her husband Dave.  The boys will head home before me, and my next stop will be Utah, where I will be joined by my sister Bink and brother John and we will spend a few days with our mom and stepfather Jim. Then, on to Colorado where I will kick back with our son August, Bink and John’s families, sister Ro and her husband Brian, as well as numerous friends and cousins.

It should be so much fun, and I intend to post from the road as well.  And when I return home, I will jump right back into painting, which has become quite an obsession.  I am working on a whole slew of them, and several are near completion.  Here is a peek at some of the works in progress:

Fresh snow and a new scan

I left the house yesterday at 5:30 in the morning, as I was to check in at the hospital at 8 a.m. for my scans (chest and abdomen).  There was a winter weather advisory, and I really hadn’t known what to expect on the roads. As it turned out, there was very little traffic, and only a light sleet was falling.  The drive was just a little over two hours, which is about as good as it gets.  However, I waited two and a half hours for my scans,  as one of the CT machines was down.

There are two waiting rooms, and before you are ushered into the inner room, you change into a johnny.  Shortly thereafter, an IV will be inserted for the contrast agent used during scanning. And then you wait some more.  It is in this second waiting room that conversation among strangers is likely to begin.  It is a small space, the chairs are arranged around the periphery, and we are all facing each other.  It is cold, and we shiver in our flimsy hospital gowns.  There is a general state of anxiety, but also acceptance, as most of us are veterans. Once, feeling curious about the particulars of a woman sitting across from me, I asked her “do you come here often?”  We both laughed at the question’s resemblance to a pick-up line in a bar, but also at its stark appropriateness in this situation (she was indeed a regular).

Yesterday’s conversation veered from the technical, as I struggled to operate my new touch screen phone, to the practical, as we offered where we’d driven in from that morning.  One young woman had come from Switzerland (it is not uncommon at MGH to encounter international patients), so she won the longest commute award.

At last my scans were done, my IV removed, and my little plastic ID bracelet cut off.  I quickly dressed and hurried to Whole Foods, where I was meeting my friend Ginger for tea.  After lunch and a lovely chat, I began the drive home.  It was sleeting heavily by then, and driving was not so much fun.  As I drove further north, the wintry mix became just snow.  It was just before 4 p.m. as I pulled into the driveway.  There is a pile of splintered wood where David has been splitting logs, and the fresh snow looked so lovely lying there, that I ran in to get my camera before I did anything else.  This is the resulting image.

Anti cancer

I spent most of today tweaking my blog so as to make it easier to navigate. I’m on unfamiliar territory here, but hats off to WordPress for making it much easier than I had anticipated, due in no small part to their little instructional videos (pleasantly narrated by a gentleman with an English accent). I have attempted to group posts by subject, with the broadest category being “Living with lung cancer”. That shall be the default position for those posts regarding day to day matters.

It was good to have some busy work today, as I am feeling too emotionally tapped out to have done anything more creative.  I have been on edge regarding my next scan, which is tomorrow. My own anxiety has been increased by the fact that several of my friends and acquaintances have recently learned that their cancer has progressed.  It’s that whole team mentality; hard not to feel that we’re all passengers on the same bus.  Sadly, David’s mom joined that team last week; she has just been diagnosed with non-Hodgkins lymphoma.   And then on Friday, a good friend was petting our dog Buddy and noticed that he had a large lump on his lower jaw. I took him to the vet this morning, and on Thursday he will have x-rays and a biopsy for what is quite possibly cancer.

At times, it is just so very difficult to stay positive.

To that end, I will take a cue from the title of todays blog.  I have just about finished reading Anti Cancer, (click on the book title should you wish to go his his website) by David Servan-Schreiber.   A number of people have recommended it to me, and I have to say it is an amazing book.  The author, a survivor of brain cancer, also wears the hats of scientist and medical doctor.  He has written an incredibly generous and easily understood account of steps each of us can take to build up our immune system and counteract the mechanisms of cancer.  He does not propose that these techniques should replace traditional medicine, but rather go hand in hand with it.  His methods include modification of diet, a regular exercise routine, as well as awareness of the mind-body connection. His is a very holistic approach, and there really is no down side to it: they are all healthy lifestyle choices, whether or not you have cancer.

And then the weeks…

In addition to losing my hair, I had one other health ‘crisis’ following my first chemotherapy session.  I began to cough and to be quite short of breath again, and was cognizant of the same rattle in my lungs which had been a constant before my surgery.  After we called my oncologist, he asked that I come in. Following a physical exam I was given a CT scan of my chest, which showed nothing more than a small area of plural effusion around the lobectomy scar (to this day, I have lobular thickening in that area that is noted on each radiology report).   He then suggested that I try using a nebulizer at home.  This treatment prompted a lot of productive coughing and gradually resulted in an easing of the breathlessness.  I  followed up with a pulmonologist, who put me back on asthma medication again.  Perhaps three months ago, I finally weaned myself off of the inhaler (Advair), but as I also have allergies, I still take Singulair and Flonase.

And so it went;  all summer long.  Chemo would knock me on my butt, and then just as I would get back on my feet again, it would be time for another go. Psychologically, it was one of the most difficult challenges I have faced.  Cancer is tough that way.  While the purpose of the treatment is to make you better (whether curative or palliative), generally it makes you feel a hell of a lot worse, at least initially. However, the will to live is strong, and most of us will do whatever it takes to extend our lives.

In between treatments, I would nestle in the hammock until I was strong enough to move about.  Occasionally, bundled up to shield my skin from the sun, David took Peter and I out in our skiff.  We lived in a coastal community bordered by salt marsh, and David would guide the little boat inland amid the tall grasses.  I took a lot of photos of the marsh that summer, some of which I am using now as reference for paintings.

As predicted, each chemo treatment was harder than the previous one.  By my fourth and final infusion, I vomited what looked like coffee grounds; it was actually blood.  But I had made it through to the other side.  Bald, skinny, and for a time diminished in both a physical and mental sense, I was happy to turn my back on this particular summer.  At the beginning of September I would have another scan, and I was oh so hopeful that the report would be  a good one.

The day(s) after chemo

Within 24 hours after a chemotherapy session, we would travel back to the hospital, where I would receive an injection of Neulasta. Neulasta prompts the body to boost production of white blood cells, as low white cell count (neutropenia) can result in secondary infections.  In addition to feeling wiped out, I now began to experience intense bone pain that would last for several days. This is a common side effect of Neulasta, and my oncologist had preemptively written a prescription for Percocet.

I was also experiencing the most intense heartburn of my life, ringing in my ears, and a bowel that would lurch between diarrhea and severe constipation. Exhausted, I spent lots of time sleeping in my ‘lazy girl’ recliner, but my sense of smell became disoriented (along with taste) and I couldn’t bear the smell of our newish oriental carpet.  David ended up having to haul it outside where he gave it an intense shampooing.  Luckily, it being June, I had the option of hanging out in the hammock on our screened-in porch, and it soon became my second home.

I was not without an attendant angel.  Our friend Miranda organized a schedule of prepared and delivered meals during the many weeks of chemotherapy.  She enlisted neighbors, friends and acquaintances, and an amazing bounty of food would arrive each evening.  Certain dishes I would have to avoid, both due to my repressed immune system and my skewed palate, but it was a huge burden off of David’s shoulders and great fun for my kids as well.

By the end of the second week, my hair began to come out.  I was taking a shower, and as I shampooed my head, my hands filled with clumps of hair.  I hadn’t been very concerned about hair loss, but when it happened, I became rather emotional. After I toweled off, I asked David to shave my head.  Soon the stubble would fall out as well, as well as any remaining hair on my body.  There was now no doubt that I was a cancer patient.

Picking up that old thread: chemical warfare

I have been putting off writing about chemotherapy. The truth is, there is a lot from that period of time that I don’t remember, and most of what I do recall is far from pleasant.  Although perhaps not quite as terrible as I had imagined, it was still a miserable experience.

The lobectomy had actually been a more physically demanding procedure, but there was a significant difference between the two treatments.  Once surgery had reached its conclusion, healing began, and the process was linear.  As chemotherapy is administered in cycles, just as you’ve begun to recover from one infusion, it is time to begin another.  And the side effects typically worsen with each consecutive cycle.  You are knocked down, you stand up, and then are knocked down even harder.

My chemotherapy consisted of a cocktail of two different agents:  Taxotere and Cisplatin (a platinum drug).   I received four cycles of each, at three week intervals.  The day before a cycle, I would take two Decadron, to combat nausea as well as inflammation;  it is also an appetite stimulant.  The morning of chemo, I would take two more Decadron and then an hour before, one dose of Emend, another anti-nausea drug.

The wing at the hospital where chemotherapy is administered is referred to as infusion.  The room itself is large and sunny and lined on both sides with recliners.  I would sit in one of these recliners as first taxotere and then cisplatin were dripped (via the port) into my veins. This would take several hours.  During the taxotere phase, my nurse Lisa would immerse my hands in a bowl of ice.  One of the possible side-effects of taxotere is peripheral neuropathy, and she believed that by chilling my fingers and thereby limiting blood flow, we could limit the degree to which that might happen.  I did develop noticeable neuropathy (numbness) in my feet, but very little in my hands, so perhaps it was effective.

One of the potential side effects I had been most anxious about, nausea, was actually fairly well managed by the plethora of anti-nausea drugs: in addition to the decadron and the emend, I was prescribed ativan, compazine, and zofran to take as needed.

Chemotherapy can also take a real toll on your blood cell counts, which is referred to as bone marrow suppression.  On the day of infusion I was given a shot of Procrit, to combat red blood cell depletion.  Procrit is a man-made form of the protein human erythropoietin, and is no longer used prophylactically to ameliorate anemia, as subsequent studies have revealed a host of dangerous side-effects.  It now carries a boxed warning, which states that “increased mortality, serious cardiovascular events, thromboembolic events, stroke, and increased risk of tumor progression or recurrence” can all occur.  Of course I don’t like the fact that I took Procrit, but at that time (June of 2005) these studies had not yet come to light.

Kidney damage is a possible side effect of Cisplatin, and prior to the second phase of infusion, I was given a large amount of fluid intravenously.  I was also encouraged to drink two to three quarts of water daily, particularly the first couple of days after therapy.

During infusion, the strongest sensation was a flushing of my skin, as well as a metallic taste, and as the day wore on, a feeling of being very out of it.  By the time David helped me to our car for the drive home, I would feel as if I’d come partially undone; my ability to think, unravelled.

Goodbye January

I am digging myself out of what would seem to be an annual January malaise. November and December have a tendency to build to some sort of happy frenzy, which, though exhausting, can make January seem rather dull and flat in comparison.  It hasn’t helped that the temperatures have been in the single digits for the past week, which feels much colder still when you account for the wind chill factor.

January did conclude with a celebration, however, as David turned fifty.  We had a lovely party at Mary and Raleigh’s house, for which Jem and Peter made whimsical pipe-cleaner crowns.  I received a flip video recorder for Christmas, and as dinner began, we passed it around the table.  I will have fun editing the resulting footage.  In the meantime, here are some little stills of the festivities:

In addition, a larger shot of one of the wonderful pipe-cleaner crowns:

Today I was able to paint again.  It had not been possible for several days due to the extreme cold.  My ‘studio’ is actually a glassed in porch, euphemistically referred to as a “three season room”.  We added electric baseboard heating as well as a ventilation fan, but when the temperatures drop too low and the wind is blasting, it is impossible to get warm in there.  In fact, it does double duty as an overflow icebox.  Today I removed the left-overs and picked up my brushes again.

Tomorrow, I will pick up a thread I dropped long ago.  I will describe my experience with traditional chemotherapy.