Monthly Archives: May 2012

R.I.P. Olive Pimento

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On Saturday our family lost a very important member. While on a walk with Jemesii, Jamie and her sister Kala, Olive was attacked by a large mixed breed dog who had broken free of a rope to which it was tethered. Although rushed to first a local vet and then, after being stabilized, Tufts Veterinary Hospital, Olive could not be saved. To have her gone, the victim of an unprovoked and vicious attack, is inconceivable.

David, Peter and I cannot be consoled, Jemesii and Jamie are heartbroken, Kala is left bewildered and confused. Olive had captured the affections of many in her short lifetime, and Jemesii’s wall on facebook is littered with stricken condolences.

Not merely a beloved pet, Olive filled the role of therapy dog. Two years ago, when Olive was yet a puppy, Jemesii was grappling with some insurmountable issues, not the least of which was an anxiety so profound she had become almost housebound. Olive immediately became Jemesii’s constant companion, and her intuitive responsiveness to Jem’s emotions was astounding. A wet nose, soft pink tongue and the most soulful eyes you could imagine provided solace and unconditional love when Jemesii needed it most. Caring for Olive, Jemesii learned how to care for herself again.

And so, when we heard what had happened, I feared this fresh trauma might be more than Jemesii could handle.

I should have known better. My daughter is a survivor through and through. Tinsel and steel she is; glittery and somewhat fragile on the outside, but tough as nails when push comes to shove. She knows the places a hurt like this could send her, but she is absolutely determined to not let that happen. Having come so far, Jemesii feels she owes a good deal of her recovery to what is now the sweetest memory ever:  Olive Pimento Delande. Rest in peace, my little grand-dog.

(photos by the best dog mama ever: Jemesii Delande)

Oh those cows

After reading my last post and in particular the part about the ‘the cows getting out of the barn’, my friend Katie happened upon a news clip pertaining to six loose bovine in Boxford, Massachusetts. She felt my metaphor come to life might just amuse me, and it has:

Police probe bovine beer bash in Boxford

Thank you Katie. These cows have made my day. As has the hilarious detail that the selectman was wearing worn out LL Bean slippers. It could only happen in New England.

Results

I thank each and every one of you for the comments as well as the messages I received. My appointment yesterday was late in the day, and after arriving home around seven, I had a cup of tea and opened some emails. Too tapped out to write, I drew a hot bath and then went straight to bed.

David was out of the house early, so after driving Peter to school, I sat down at the computer and thought I better get a blog up. Alice called (bless her) with some measurements and clarification and then I decided that what I really wanted to do was go back to bed. And I did.

Morning naps are the best. I awakened rested and with that pleasant sense of momentary disorientation…still a bit tangled in the brief dreams I’d just had and totally free of yesterday’s worries.

So. The reports from the scan are not a catastrophe. What was characterized in the previous scan as ‘These findings may represent mild increase in minimally invasive adenocarcinoma‘ is now ‘Increasing round glass opacities in the lateral portion of the left lower lobe and slight interval enlargement of a nodule adjacent to the right minor fissure are suspicious for progressive lung cancer.

Simply put, it is clear that I am developing resistance to LDK378. My cancer, that tricky devil, has figured out a way around yet another therapy.  The largest single lesion, which is actually a patchy ground glass opacity, measured 2.5 cm at its longest point on 2/21/12 and was stable from previous reports. On 4/03/12, there was a slight increase to 2.8 cm. The latest report, dated 5/15/12, notes an increase to 3.5 cm.

Clinical trials utilize a tricky algorithm called RECIST to measure response. The technique is planar, rather than volumetric and is based on averages from several target lesions. BAC, which is characterized by hazy infiltrates rather than clearly delineated solid tumors, is not given to easy quantification.

As Alice explained this morning, for the purpose of the clinical trial, my tumors are only minimally increased in size. This is important, because after a certain degree of progression has occurred, a participant will likely be asked to leave the trial.

That’s the good news. The bad news is that the cows are out of the barn and although not yet stampeding, they are getting mighty restless.

So what’s next? Stay the course for the moment. Inquire as to whether or not Novartis would grant permission to return to a dose of 500 mg LDK once again; albeit with careful monitoring of liver enzymes. Monitor my physical symptoms closely; there is in fact a bit of wheezing in both lungs now.

We will also watch that 6 mm spot in my right lung with interest; perhaps it might become a candidate for biopsy whereas the ground glass opacities are fairly useless in that respect. A curious aspect of this particular recurrence is that although the cancer is cropping up in pretty much the same spot it has before, the appearance is slightly different; more haze and less opacity. And that 6 mm nodule appears to be an entirely different beast altogether, prompting me to ask Alice if it is possible that these two separate areas of apparent progression might be driven by individual (and newly acquired) mutations, each conferring their own mode of resistance. Intriguingly, but damnably frustrating as well, the answer is yes, that is possible.

In conclusion, I started on LDK back in September of 2011. Nine months and counting for an experimental cancer treatment is really quite good, and I knew when I signed on, that this would be a temporary fix. I hope to squeeze another few months out of it but if that’s not possible, there are options. Which in itself, is an amazing thing.

I told Alice yesterday that I’m planning on attending Peter’s graduation from high school. That will be three years from now. She thinks it could be doable.

That’s all I need to hear.

An uncommon degree of anxiety

Last Tuesday I had a chest CT scan and tomorrow I have an appointment with Alice (Dr. Shaw) to go over the report.  Generally, Alice calls as soon as she reviews the films, but last week she was in Japan for the Xalkori launch.

I am experiencing a wicked case of scanxiety;  a term often used by cancer patients to describe the dread one feels in regard to scans.

Per the protocol for the LDK378 trial, I have CT scans of my chest and abdomen every six weeks. Usually, the whole process feels a bit routine and I don’t find myself too troubled as I wait for results.

I slept fitfully last night; twice roused from sleep by terrifying dreams. Between one and four in the morning, I couldn’t sleep at all. Today, I found my thoughts returning again and again to the scans.

I am trying to understand why I feel so anxious. Symptomatically, I have become aware of increasing shortness of breath. When I lay down at night the wheeze in my left upper lobe is quite audible.

This morning, I found a brief email in my inbox from Alice. She made no mention of the scans. I am currently in such a state, that I have interpreted that omission as a bad omen.

Hopefully, this is all a bit of nonsense on my part and I will return from the appointment bearing news of a reasonable report. For the moment, it is fingers crossed, ativan at the ready.

One in a hundred

There is a special evening coming up. For the past five years, Massachusetts General Hospital has hosted an annual fundraiser where one hundred different individuals or organizations are honored for contributions they have made to the cancer community. Happily, Dr. Alice Shaw will be recognized this year. Surprisingly, so will I. It should be one fun soiree, and all are invited. The down side: the tickets are bloody expensive ($500 each). However, $300 of that is tax deductible and the money raised benefits the MGH Cancer Center.

The venue is the Westin Boston Waterfront and there will be cocktails at 6:00 p.m. and Dinner and the Program at 7:00 p.m. Should additional incentive be needed, Academy Award winner Matt Damon is a special guest.  For a complete list of nominees as well as more information:

Cheers!

Labor not lost

Happy Mother’s day y’all. I spent mine washing all the windows and getting the screens up, followed by some weeding and trimming in the garden. David and Pete, per my request, devoted a chunk of time to cleaning out the garage. I adore getting things done. As a reward for our collective labor, David grilled steaks and potatoes; steamed beets and even squeezed limes for a well deserved but (unauthorized) margarita.

My big kids both called (Pete penned a sweet note) and I telephoned my mothers in turn. And then, as one is wont to do on such a holiday, spent some time thinking about what it means to be a mother.

For me, everything. There is nothing that is more important to me than my three children. They never cease to intrigue, surprise, occasionally confound and ultimately amaze. If I were not Jemesii, August and Peter’s mom, I would hope to be their friends.

And no, I don’t believe the two roles are interchangeable. I have never tried to be my children’s pal. I feel as if doing so would have compromised my role as a parent (somebody has to be in charge and it’s too much to expect of a child) and possibly invaded their personal space.

At any rate, the mother/child relationship has a very different dynamic than friendship, which is vulnerable to the whims of one party. By definition, you cannot initiate or maintain a friendship without mutual agreement.

The love I feel for my children is independent of any external forces. I love them each absolutely and without expectation. And, although I need to love them, I don’t need for them to love me.

Crazy talk, you might say. But not really. Just as most parents do, I desire a close relationship with my children. I am pretty sure I have one. What I don’t want is for my children to feel tethered or that they owe me anything: filial obligation is not part of my personal construct.

Jemesii, August and Peter; thank you. Being your mother is the greatest gift imaginable. As you make your place in the world, keep your hearts open. And never forget that I love you all, always.

My first born, Jemesii

Moving right along

I love to walk. Running, not so much. And yet in high school I signed up for both the track and the cross country teams. I excelled at neither (or, more plainly put, I sucked at both). Perhaps my only noteworthy qualities were my dogged pursuit of mediocrity as well as a certain stubbornness; during practice one day I experienced a sharp pain on the outside of my right ankle. The coach pooh-poohed my supposed injury and the following morning I ran the required seven miles with the rest of the team. Well, that ankle swelled up like a balloon and an x-ray confirmed a stress fracture of the fibula. My credibility may have been restored but my brief and unremarkable career as a runner had come to an end.

Two recent articles have prompted me to wonder if I should give it another chance. On April 22nd, the New York Times Magazine featured a story titled Jogging Your Brain. Researchers at the Beckman Institute for Technology measured the cognitive power of four groups of mice before and after placement in distinctly different environments. The first cage offered a wide range of foods as well as stimulating ‘toys’, a second cage was much the same but also had a wheel on which to run. A third cage was totally unembellished and the fare was dry kibble. And the fourth cage was similar to the third but with the addition of a running wheel.

Interestingly, it was only the ability to run that made a difference; “Animals that exercised, whether or not they had any other enrichments in their cages, had healthier brains and performed significantly better on cognitive tests than the other mice.” Of note, the mice did enjoy the ‘toys’, but without also exercising, realized no cognitive gains.

So running might make us a bit smarter. Also, we might live longer. According to a new study out of Copenhagen, those who jogged regularly, lived an average of six years longer. Of course, if you are going to live longer, you might as well look good, and, again, exercise may be the way to go. For those interested in retaining shiny pelts and youthful gonads, check out the results of research from Ontario in which mice harboring a genetic mutation which disrupts mitochrondrial repair are nonetheless able to overcome the ravages of aging by, yes, running.

It all makes a bit of sense. Humans are designed to run, and our natural ability as long distance runners offered us a great evolutionary advantage. In fact, I would go so far to say that exercise is even more important than diet; until very recently (and this is still true in less prosperous nations), food was often scanty and a well balanced diet a luxury. We were always on the move, not only in search of our next meal, but in an effort not to become a meal ourselves. It is the way of nature, and only humans and the animals we have ‘domesticated’ live otherwise.

Ultimately, even if running is not/cannot be your thing, keep in mind that exercise of any sort is going to do your body good. However, for those of who are, as I am now, sitting in front of a computer monitor, there is some good news in that regard. According to a report from the Mayo Clinic, “Combining mentally stimulating activities, such as using a computer, with moderate exercise decreases your odds of having memory loss more than computer use or exercise alone.” Just as I suspected:  humans can benefit from the addition of stimulating toys, but should not become so immersed in them that we become sedentary.

If we make regular exercise a habit, perhaps we can live longer, be smarter and maybe even look better too. Just don’t forget your sunscreen.