Cover girl and a back story

I was in Boston on Monday for labwork, and just adjacent to the elevators is a wall rack where they display current issues of the MGH Cancer Center magazine. On the cover was a familiar image, a CT scan of lungs pre and post crizotinib. Although not identified, they are my lungs. So, I guess that makes me a cover girl.

While there I also paid a quick visit to my friend Sarah Broom (a poet: http://lifeandbreath.wordpress.com/2011/09/06/if-the-world/), who has traveled from her home in New Zealand to enroll in a Clinical trial at Massachusetts General Hospital. We had gotten together the previous week for lunch and on Sunday Evening she’d driven to our house in Amherst with her brother Alex, who was visiting from Australia to be with Sarah as she started trial (her husband is at home with their three young children). The meal on Sunday (local lobster) was really pleasant and Sarah’s brother is every bit as charming as she.  Afterward they managed, for the most part, to stay on the right side of the road (which would be the wrong side of the road ‘down under’) on the drive back to Cambridge.

But more about Sarah and that back story. Back in August of 2008, when my oncologist (at that time, Dr. Tom Lynch) told me that as a newly identified ALK ‘mutant’ I was eligible for enrollment in the phase I trial for PF-02341066 (crizotinib), the trial was transitioning from an initial focus on gastrointestinal cancers to lung cancer. Only one other lung cancer patient had been on trial at MGH, and he had died within weeks of enrolling (his lung cancer was responding to crizotinib, but his disease was ultimately too widespread). Although this news did nothing to alleviate my fear, it also didn’t dampen my enthusiasm; possible death (trial) versus certain death (continued tarceva, chemo, or no treatment at all).

It was but a few weeks later that I became aware of Kevin Brumett, after my husband conducted an internet search for information on ALK mutations. Kevin had posted on Inspire, the online site which I soon joined and continue to participate in. I contacted Kevin, also an ALK mutant. He had been on trial at Dana Farber for some weeks and had recently gotten back his first scans, which showed significant improvement. Kevin immediately became my beacon; this courageous and incredibly optimistic young man who was just ahead of me on this path to who knew where.

I started trial on October 1, 2008 and soon thereafter Kevin told me of another fellow traveler, Sarah Broom, in New Zealand.

Unfortunately Kevin developed a large number of brain metastases early in 2006, and it was at that point that it began to be clear that crizotinib might not cross the blood/brain barrier. Several months later, Kevin died and Sarah and I fell out of touch for a time as well.

Perhaps a year and a half ago we began emailing again and eventually spoke on the phone as well. Now, in a curious turn of fate, we are in the same place once more, each enrolled in clinical trials. LDK378, which is a second generation ALK inhibitor for me, and AUY922, an HSP-90 inhibitor for Sarah. There is a good chance I will eventually go on AUY922 and she on LDK378. Talking at dinner the other evening, we figured that we are number three (Sarah) and number four (myself) in the world to have gone on crizotinib–(although I might have to share number four with another individual who went on trial either the day before or after me at MGH).

It’s all rather remarkable. Our friendship, begun in the most unlikely fashion, the distance we have each traveled (more metaphorically speaking when I refer to myself, but in Sarah’s case, coming from New Zealand, the real deal). The fact that we are both still here, trudging forward, looking for sure footing.

As for those liver enzymes; falling. SGPT is 66 and SGOT is 62. And the wine tasting party? So much fun (hosted by the same fabulous friends who made 11/11/11 special for Pete and I). Part of the evening involved a little contest; we were served pairings and asked to distinguish between labels/vintages. Well friends, my fellow contestants were all quite able, but out of a field of twelve, I tied for first after getting them all correct. My secret? Not mere luck, but rather a reliance on instinct (a superior tool in matters of the senses–but I was nonetheless surprised as well as mighty pleased by my little coup).

My prize? A  lovely bottle of sauterne and liver enzymes headed in the right direction. Win win.

Playing the numbers

Slow, but steady. The results are in from my recent CT scan and 40% resolution has eased on up to 45%. A significant five percent, as the negative side effects (gastrointestinal issues) from LDK378 have increased in intensity as well.  Dr. Shaw and I had spoken about possibly moving my dose back down to 400 mg if there had been no incremental improvement in tumor burden.

The Radiology Report is less cheering, although certainly is not what I would characterize as a bad report. It reads:

IMPRESSION:  Persistent groundglass opacities in the anterior and inferior left lung and along the right minor fissure. The opacities in the left lung are slightly more prominent. There are no definite new lesions.

It’s all a curious algorithm; this response/non-response thing. “Tumor size has traditionally been estimated from bidimensional measurements (the product of the longest diameter and its longest perpendicular diameter for each tumor)” (quoted from an article in the Japanese Journal of Clinical Oncology) Basically, a linear measurement, which is quite dependent upon the outside diameter of a lesion, is used to estimate volume. Baseline measurements are taken at the onset of a particular treatment, and response (and/or stability or progression) is assessed by comparing successive scans to the initial chest CT. Evidently my earlier 40% (http://lifeandbreath.wordpress.com/2011/12/14/big-four-oh/) was not the cutoff for partial response but rather exceeded it. I should have done my homework. From Wikipedia:

Evaluation of target lesions

• Complete Response (CR): Disappearance of all target lesions
• Partial Response (PR): At least a 30% decrease in the sum of the LD of target lesions, taking as reference the baseline sum LD
• Stable Disease (SD): Neither sufficient shrinkage to qualify for PR nor sufficient increase to qualify for PD, taking as reference the smallest sum LD since the treatment started
• Progressive Disease (PD): At least a 20% increase in the sum of the LD of target lesions, taking as reference the smallest sum LD recorded since the treatment started or the appearance of one or more new lesion

Odd as well is the 5% increase in response coupled with the possible area of greater consolidation noted on the radiology report. Which to me illustrates the limitations of any sort of quantitative measurements; it is all seems a bit hypothetical/ best guess sort of stuff. Data collection. Bottom line, my lungs feel and sound pretty darn good.

The numbers on my labs are closer to normal as well; the oral iron supplement I began taking several weeks ago is helping.

The one concern of the moment is my liver enzymes, transaminases-SGOT and SGPT.

So what is a transaminase? From MedicineNet.com: The transaminases are enzymes that catalyze chemical reactions in the body in which an amino group is transferred from a donor molecule to a recipient molecule. (!)

SGOT is an acronym for serum glutamic oxaloacetic transaminase and SGPT for serum glutamic pyruvic transaminase. Just in case you wanted to know. What is really relevant is that they are enzymes in the liver and elevated values of either can be an indicator of liver inflammation.

My SGOT/SGPT values were ever so slightly elevated the entire time I was on crizotinib. When I went off treatment they fell to normal levels, but soon after my first dose of LDK378, the levels again became slightly elevated. After my dose went up to 500 mg, the values began to rise again.  My SGOT level peaked at 84 a week ago and is now down to 67. The normal reference range for SGOT is 9-32 U/L  (units per liter of serum–the liquid part of blood). My SGPT was at 79 last week and this week  topped out at 102. Normal reference ranges for SGPT are 7-30 U/L.

Hopefully the SGPT has peaked and will start to go down. In the meantime, a glass of wine in the evening is not an option. Sadly, we’ve been invited to a wine tasting party this very weekend (for the oenophiles out there, all with a rating of 93 or above). When I asked Alice (Dr Shaw) if I’d be able to participate, she said, “Wine tasting is just sips of wine, right?” “Well…” I replied, “it can be done that way”.  So I’ve been given clearance to slosh a bit around in my mouth. Just like the real sommeliers. I don’t believe I’ll be able to bring myself to spit it out though; that just wouldn’t be right.

It snows

And it snows…

Heartbroken

I have been checking Leslie and Rob’s blog several times a day for updates. Rob’s passing was expected, but that doesn’t necessarily make it any more comprehensible.

January 5, 2011–Fair winds and following seas…

It is with a heavy heart that I let you know that Rob passed away peacefully this afternoon at home, surrounded by his family. Even the cat was on the bed.

Thank you to everyone who wrote to us with wonderful stories from your good times together. We read each and every note to him, and he was very touched (as were we all). And for all of you who also love “Desert Solitaire”, you should know that Marnie was reading it aloud to him in the minutes before he left us.

We are a little overwhelmed right now, so it would be good to hold off on calling. We will be planning a celebration of life in the not too distant future, so stay tuned.

Oh man. Such a good, good guy and a very special couple. I just know that Leslie will keep the essence of Rob close in her heart, and that he is now free to wander again, something he loved so and that cancer had taken from him.

Smooth sailing, my friend.

And now it’s our turn to hold Leslie tight.

Connections; people I’ve come to really care about

Monday was an odd day. I got up late as I was still having trouble sleeping, and the first thing I did was log onto my computer. A message popped up on the screen informing me that the clock had been set to expire in 2001. ?! Sure enough, even though it was now the 2nd of January, 2012, the little calendar icon at the bottom told me it was the 31st of December, the time was 7:30 pm, and when I clicked on CNN under news, it was all about the New Years Eve celebrations  currently under way. Remember the classic Bill Murray film Groundhog Day?

David did a little of this and a little of that and my computer returned to the proper time frame. I had a scheduled 11:30 am appointment for labs in Boston, and I was going to be late.

When I pulled up to the Yawkey building a little before noon, there were big plastic barriers blocking the entrance. The garage had the usual number of cars, but when I got off the elevator and stepped into the lobby, it was eerily quiet. And when I arrived at Yawkey 7B, the doors were locked and the waiting room empty. Now this was a fine kettle of fish.

The first thing I did was to call David and have him check my printout calendar, just in case I’d made a mistake. But, in fact, I was supposedly in the right place at (almost) the right time. As Boston is a good hour or more (depending on traffic) from my residence, and this was just a blood draw, I was in no mood to come back the next day. A phone call later, and I was in Infusion, which was open with a smattering of patients and staff. I explained my situation and after several more phone calls, I got my blood drawn. Everything was back on track.

On a much more somber note, my friend Rob (who, along with his wife Leslie, sent me the wonderful groundhog puppet), has not been doing well. It would seem he gets one issued resolved only to have another, more serious symptom pull the rug out from beneath his feet. Christmas Eve was Rob and Leslie’s second anniversary, and he entered home hospice not long after. He is always on my mind, and I wished to write about Rob, but struggled mightily with how to do it.

Leslie and Rob have published a blog together ever since his diagnosis, and Leslie’s post dated December 27th, described in a straightforward and beautiful fashion the current situation. I asked her permission to reprint it here. Should you like to catch up on their story or receive updates, simply click on this link: Rob’s Adventure, sailing upwind in a storm.

December 27, 2011 – Sad times

Rob was sprung from the hospital on Saturday and was able to spend Christmas eve at home – the best anniversary present ever. On Christmas day our dear friends John and Jo Ann brought a wonderful dinner of fresh crab and smoked salmon, which we were able to enjoy with Rob’s sister Marnie, who flew in from Rhode Island. Rob is now completely bedridden and sleeps much of the time, but he is comfortable and in no pain (he no longer needs any pain meds). This is remarkable since only a couple of weeks ago he was in excruciating pain from the sciatica — at least the radiation therapy worked for those symptoms.

His desire for food and drink has diminished, one of the signs that the end is growing near. There’s no way to know exactly how much time he has left, but we are focused on making his remaining time as comfortable and full of love as possible. The Hospice by the Bay team has been wonderful. It’s reassuring to know that there’s a number I can call 24/7 for help with any issue that might arise.

Thank you to everyone who has written. I read every letter and email to Rob, even though they are bittersweet for him. He especially likes to remember stories from his adventures over the years. Hearing is supposedly the last sense to go, so please keep them coming.  He is incredibly sad that his life is being cut so short. One of the social workers explained that while we are losing him, he is losing all of us — everyone and everything in his life. Unbelievably difficult.

A number of friends have asked about visiting. Rob is sensitive to having people see him in this diminished state, and has asked that this final time to be spent privately with family and only a few friends.

Please keep Rob and Leslie in your thoughts.

This morning my husband whispered

rabbit rabbit in the dog’s ear because his wife was still sleeping. And not because she had overindulged. In fact, I’ve been up to my ears working on some proposals and all I wanted to do last night was sit mindlessly in front of the television. Something I almost never do. The Three Stooges, an episode of Star Trek, and Justin Beiber, Pitbull and Lady Gaga at Times Square. We tumbled into bed just before the fireworks started (legal in New Hampshire, so a must have at any occasion). Poor Buddy, he of the rabbit rabbit early morning incident and, sadly, epileptic, was becoming more anxious with each boom. I tossed and I turned and it was already three hours into 2012 before I finally fell asleep.

WordPress, the online platform for my blog, emailed users end of the year stats. For what it’s worth, I’m honestly not sure how accurate their algorithm, hits = views, is. However, supposedly Life and Breath was viewed about 58,000 times last year. A drop in the bucket compared to say, the number of people who subscribe to Alec Baldwin’s twitter account (wait–I just tried to verify that number, and his account has been suspended). Okay, eat your heart out, Alec!

I was most tickled by the fact that there are quite literally people all over the world checking in. An icon of what looked like a little Russian nesting doll represented areas of greatest concentration, (bigger nesting doll, more people reading the blog) but it is also broken down by region, and the stats don’t all add up to 100%. I couldn’t tell you what’s up with that, but my best guess is that they stopped after the top 5 (or 2 or 3). Anyway, it’s interesting; this snapshot of our global community:

North America

92.9%  US, 7% Canada, .1% Mexico

Europe

27.4% UK, 12% Finland, 10.2% Sweden, 8.3% Netherlands, 6.8% Belgium

Africa

46.7% South Africa, 20% Egypt, 6.7% Kenya, 6.7% Uganda, 3.3% Zambia

Asia

25.3% Japan, 14.9% Hong Kong, 14.7% India, 8.9% Phillippines, 8.3% Indonesia

Oceania

63.3% Australia, 36.7% New Zealand

 

So, to my friends all over the world, those I’ve met and those I have not, I wish you a happy and healthy New Year.

Greeting from an old friend

Following one of my recent appointments in Boston, I took a stroll along Charles St. to do some stocking stuffer shopping (chocolate, in a wide variety of amazing variations). I popped into a small stationary store, where I purchased the snowman/Kenmore Square postcard in my previous post. There was another greeting card that really grabbed my attention though. Upon spying it, my first thought (just a bit self-indulgent) was that I would really love it if someone sent that card to me.

As I was paying for my two purchases, I said to the salesclerk, “would you like to hear something really terrible?” Mais oui! She loved hearing terrible things. Well, perhaps I’d built it up a bit much, but I told her that I planned to mail the special card to myself. “Oh! I hope you do!” She said. That was all the encouragement I needed.

The next morning I mailed some packages as well as an envelope addressed to myself.

Peter was with me the next day when I fetched our mail from the box. “Oh look”, I said, “a card for me!” As he looked over my shoulder with mild curiosity, I opened my beautiful card. Inside was written, Love, Linnea.

Peter’s response was his typical, “Oh gawd, Mom. You are such a dork”. But then he said, “The next time you need emergency affirmation just let me know.”

That boy’s going to make someone very happy someday. And the card looks lovely on the wall of my closet.

Quick anatomy of a holiday

It was a fine Christmas. And we weren’t without a tree–David brought home a ‘small’ eight footer several days prior. Peter and he were indeed in charge of hanging ornaments, although I couldn’t resist placing a few.

Jem, Jamie, Olive and Kala joined us for a late dinner on Christmas eve, and the girls (dogs) were beautifully dressed in Suessian outfits sewn by our creative daughter. David made a splendid roast, and I baked our traditional coffee cake for breakfast on Christmas morning, using my mother’s time honored recipe.

As Peter is now a mature fourteen, we rose at a leisurely hour;  a pleasant change from the past twenty-five or so collective Christmases. Everyone was pleased with their gifts (electric toothbrushes all around!) and David surprised me with two beautiful silk carpets he’d picked out and had shipped from Mumbai.

Calls were placed and received to and from all the family members not present, and for two days straight we enjoyed not going anywhere.

I now look forward to the New Year and all of the possibilities it will bring.

Jem's virtual fireplace and mini tree

Merry merry.

And now for some holiday cheer

…prefaced by some personal crankiness. I wish that the Pilgrims had somehow been given the foresight to realize that celebrating Thanksgiving a scant month prior to Christmas, Hanukkah and other holiday celebrations was ridiculous. Couldn’t there be a mandate to move it back a month or two? I mean, aside from the possibility that cranberries and squash might not be in season, what would be the harm?

We don’t even have a tree yet this year, and I told my husband that if one should magically appear, I wasn’t sure I was up to dragging out the ornaments; I am simply feeling spent. It is not a particularly jolly state of mind.

However, ultimately good cheer is my objective, and the other day I was perusing Inspire (the online support group I participate in) when I came upon a post that really warmed my heart. It was written by my good (online) friend Alta (name not changed), a five foot zero spitfire of Italian/French extraction who is giving lung cancer a run for its money. She gave me her blessing to reprint it, although the names have been changed in order to maintain the privacy of her friends and family. Please enjoy:

“Our house looks festive, the outdoor lights are up and the Christmas tree is decorated. Todd and I did our shopping on line and many of our neighbors brought over some home made cookies. I could not be more content. All I have to do is admire my little Elf’s magic work come to life. My kids did a great job. They put everything together just like I would have. I remember giving this exact gift to them for many, many years. This year and last year it was their turn to give me the Christmas Spirit and God knows I needed the help. Todd asked me to share with you our Christmas story and offered to type it for me. He knows I miss writing to you.

Here goes;
It was in December of 1992; Todd and I had just bought the house we live in now. It was bigger, with more bedrooms and more bathrooms than the one we lived in before. It is a simple large ranch style house with a ½ acre of backyard for the kids to play in. We moved in on December 22 just two days before Christmas Eve. Our youngest child was nine months old and with the moving preparations, I simply did not have time to decorate our new home. I barely had time to buy presents let alone decorate. We did have a beautifully lit real Christmas tree right in the middle of the living room.

On Christmas Eve, I tried my best to create a cheerful setting for the family but by the looks on my five children’s faces, I knew they were home sick. They already missed their friends they left behind.
The walls and windows were bare, the arrival of cardboard boxes and furniture were scattered all over the house. When one of us raised our voices, the echo bounced from one wall to another. The only thing we had in place, were the beds. Todd bought a couple of bundles of firewood to light a fire in the fireplace. With a heavy heart, I searched for my children’s Christmas stockings in the pile of boxes that were by the basement door. I hung the stockings on the mantle thinking that maybe it will help to cheer the kids up.

Jenny was ready for bed right about the same time Todd finished putting the crib together. While I was tucking in the baby, my teenage daughters admired their bathroom. We now had a “girl’s bathroom” and a “boy’s bathroom”. Believe me it is a very, very big deal when you have teenagers of different genders in one family.
Todd planned to take the boys to the grocery store and I asked him to buy three pre-roasted chickens, anything else he thought the kids would want to eat for dinner and a special desert to celebrate Christmas Eve.
I took advantage of the quiet time, sat on one of the moving boxes and had a cup of hot tea. My heart was overjoyed and yet saddened; I knew I was going to miss my old neighborhood. After all, we are creatures of habit aren’t we? I worried about the kids changing schools, leaving their friends behind right in the middle of Winter break. If we had waited to move, we would have lost the opportunity to purchase this house for the price the owners were asking. I sat there taking in a deep breath, (at the time I could do that) and hoped for the best for all of us. I was very tired and wished for some kind of a sign that would reassure me; I was hoping we made the right decision. All I wanted was for my children to feel the Christmas spirit and to appreciate their Blessings.

After dinner, we all sat by the fireplace on the carpeted floor in the family room. Todd and the kids were playing a card game of Uno. They were in their pajamas bopping their heads back and forth humming along with Burl Ives singing “Frosty the Snowman” on the radio. Even the flames in the fireplace danced along with this favorite Christmas tune. Finally, a little bit of the Christmas Spirit came around our family.
As I exhaled a sigh of relief, I heard our doorbell ring. I got up reluctantly mumbling with annoyance, “Who could that be at nine thirty at night?” I was not a happy camper and not in the mood to entertain anyone.
I opened the front door and I was bewildered by what was standing there in front of me. I let out a very loud… “Oh my God!” “Santa! Santa! You came! You came to our house! Thank you! Thank You! Kids! Come quick! Santa’s here! Santa’s here! Todd Honey! Santa Claus is here to see us! Come here quick!”…
Standing in the entry of our house was Santa Claus in a beautiful red and white suit. His belt buckle was golden and shiny. His beard and hair were snow white and real. He put down his big red bag full of presents next to his clean shiny black boots. Santa Claus began to distribute out the gifts; books, dolls, board games and there was even a stuffed animal for the baby. We all stood there staring and paralyzed with stupor. He handed me a box of chocolates and gave Todd a bottle of red wine. For a moment, my three older children were actually wondering if Santa really existed. Of course… I always knew Santa was real.
Todd approached me and with a soft voice and a puzzled look, he asked me when I planned this surprise. He then proceeded to say in a very quiet voice, “Wow, honey, you really pulled that one off.” I looked back at him with big wide eyes and said, “I didn’t plan this. I thought you did”.
I approached Santa and I said, “Oh Santa, thank you for visiting our house. Thank you so much”. I hugged and kissed him on the cheek and whispered in his ear…”Who are you?” He whispered back, “I’m Ed, your next door neighbor. Welcome to the neighborhood.”

Ed was 72 years old at the time. Todd and I took care of him and his wife Betty until they both passed away last year at the ages of 91. We made sure they always had a Thanksgiving dinner and a decorated Christmas tree by their family room window. They had two children who lived in Alaska and no grand children. They were married to each other for 64 years and were left to be alone for many Holidays. Ed will always be our Santa Claus; He made “The Night Before Christmas” a reality. It is when you least expect it that wishes come true. We must always believe and never give up.”

Hear hear!