Monthly Archives: May 2011

I’m back

The boys have both had nasty chest infections this week and so I have taken advantage of the temporary two address status by sequestering myself in the new house. Some patio furniture, one small table and a mattress on the floor. I’m set! Oh yeah, and a television. Night before last I watched Dancing With the Stars. Quite honestly, it felt like a waste of time, but hey, that was the point. I have been luxuriating in a brief respite from all that is pressing; including (somewhat regrettably) writing a blog. Instead, I’ve mopped floors, put things away in cupboards, lain in the sun by the pool (not yet unwrapped, but yes, we have a pool!), made a few changes to the lovely gardens, and sipped martinis with dinner three nights in a row (a treat, not a trend).

I think I’m in love with this house. Which is a good thing. And I also believe I’m feeling a whole lot sunnier in general. Also good.

But my little break has gone on long enough. First, a blog and then back to Blueberry Hill for some more packing and painting.

But I haven’t finished telling you about Colorado. The supine feline on the left is Lucky, my niece Zola’s cat. The foggy image in the mirror could be considered another accidental self portrait.

Lucky’s posture pretty much sums up the way I felt spending time with family. I’ve already mentioned how great it was to be with August, but it was beyond wonderful to spend time with Bink, Greg, Mesa and Zola as well. When I was growing up, my little sister Bink was sort of a constant present in my life and I really miss being able to just hang out and do sisterly things. My brother in law is a ton of fun and my nieces are just some of the best girls ever. Watching them play soccer, going to a school projects presentation, playing hooky (them, not me) and going out to breakfast:  it was just splendid.

I also got to share Easter dinner with Greg’s parents Bud and Judy, and that was a pleasure. My brother John and his girlfriend Amanda stopped in to say a quick hello, and then on my last morning in Colorado, John gave me a ride to the airport and as my flight was delayed, we enjoyed breakfast together.

And Claire. My dear friend Claire, who has been there for so many seminal moments in my life and yet from whom I have been geographically distant for far too long. We spent a little over a blissful hour together, joined by her husband and my friend, Andre. When I left, I was carrying one of Claire’s beautiful paintings under my arm:  it was hanging on her wall, I fell in love with it, she told me she had painted it, and that I should take it with me. Just like that. Time to get busy on one in exchange (I love trades).

And then it was time for the primary reason for my trip to Colorado. I was an attendee at the Lung Cancer Advocacy Summit sponsored by the National Lung Cancer Partnership.

The conference, simply put, blew my mind. The educational component began with the science of lung cancer, and included a field trip to the lung cancer research laboratories at the University of Colorado. We were able to view lung cancer cells beneath a microscope and to see actual images of FISH analysis of genetic mutations (including EML4-ALK). It was all incredibly reassuring to know that these bright minds were hard at work on the study of lung cancer.

Subsequent days were spent discussing the stigma associated with our disease, which was compared to the bias that those with HIV suffer; a very interesting parallel. We also learned a bit about the legislative process and discussed engaging the media and raising funding for lung cancer. And, of course, we all traded stories and bonded in that peculiarly strong and immediate way that people do when they are in the midst of a disaster. Everyone present at that conference has been impacted one way or the other by lung cancer, whether as a caregiver, survivor,  family member or close friend who has lost someone to the disease.

To say the summit was life changing is an understatement, and I thank and commend the National Lung Cancer Partnership for putting together an incredibly well organized and informative weekend. And for allowing me to attend 🙂

And so what else?

Well, on the last night of the conference I snuck off for dinner with an old boyfriend whom I’d not seen for twenty four years and who now lives in Denver. Fritz, his partner Amy and I spent a lovely few hours together. They make a great couple and it was good to see my old friend so happy. Hopefully we won’t let a quarter of a century go by again before we sup again.

On the final morning I awoke quite early and slipped down to the hotel restaurant for breakfast a little past six. Three of the booths had occupants and the man in the booth closest to the entrance looked an awful lot like my little brother Daniel. My heart dropped to my stomach when I realized he was  my brother Daniel. I called out his name and cried, laughed and hugged him simultaneously.

Daniel was every bit as shocked as I, and I asked if I could join him for breakfast. Unfortunately he was just leaving (he is a steward for an airline), but he suggested that I walk out with him and he would introduce me to his wife.

Now for a little background. I am the oldest of seven siblings; Daniel is second to youngest. He lives in Alaska and I live in New Hampshire. For reasons that I don’t entirely understand, Daniel has estranged himself from most of our family. I hadn’t seen him for almost four years. And here we were, in a hotel restaurant in Denver, Colorado, at exactly the same place and same time for a few moments. If that’s not magical I’m not sure what is. And just to prove to my family (and myself!) that this had had really happened, I asked a friend of Daniel’s to take a photo of the three of us:

And, of course, I hope running into Daniel is both a sign and a trend. I miss my little brother.

When the conference broke up at noon many emotional farewells were made, and then my youngest sibling, Rosalie picked me up to take me back for a night to her home in Boulder. She is pregnant with her first child and together with her husband Brian, we had a too brief but oh so wonderful reunion as well. To have actually seen four of my brothers and sisters in one week was such a treat.

And then, it was time to go home. And here I am.

Unwanted progress

I will tell you about the rest of my magical trip to Colorado. I promise. But first, I have to report that stability no longer reigns. I have transcribed some of the radiology report below:

LUNGS:  On image number 51 in the right upper lobe there is a 1.1-cm ground glass nodule which has increased compared to November 30, 2010. On image number 57 in the region of the minor fissure there is a 5-mm nodule which is increased in size compared to the prior examination of January 20, 2011. On image number 61 adjacent to the minor fissure, there is a region of ground glass opacity which is mildly increased since January 2011. 

The inferior aspect of the left upper lobe nodule which was recently biopsied is mildly increased. For example, on image number 46 a solid ground glass nodule is 1.3-cm (previously 1.1-cm on the January 2o11 examination). On image number 51 in the left upper lobe, there is a 6-mm nodule slightly increased in size compared to the prior exam. A focus of ground glass opacity in the periphery on image number 50 is also mildly increased. An area of ground glass opacity in the left upper lobe image 57 is more solid appearing. End of ground glass opacity in the left upper lobe extending from images 63-97 is increased. For example, on image number 66 there is a region of ground glass opacity which is 4.3 + 2 + 1-cm (previously 3.7 + 1.6-cm). Increased ground glass opacities also demonstrated adjacent to the left ventricle.

PFS, or Progression Free Survival, is one of the criterium used to evaluate the efficacy of a drug in clinical trials. My period of PFS is now officially over, and I could be released from the trial. However, conversations have already taken place between my team and Pfizer. As I still appear to be receiving some positive benefit from crizotinib, I shall continue therapy with it.

I have a brain MRI coming up due to my report of increased vomiting and headaches; I feel it is related to the fact that crizotinb is no longer totally effective. A busy boy is a good boy, and not finding enough suitable targets in my body anymore, crizotinib has evolved into a bit of a bored boy, perhaps engaging in a touch of random mayhem (*not a medical interpretation–merely my own). Dr. Shaw is, however, diligent and although brain mets are unlikely with BAC, they are not unheard of.

My next CT scan will be in two months again and I am to pay attention to my symptoms. For the moment, I have slight SOB, some coughing, and a crackling sound in my left lung upon laying down. I am cognizant of all too familiar changes in my body, yet I don’t really feel sick (sad, yes, sick, no).

As far as possible treatment options; we are now tossing around three. Another potent ALK inhibitor, Novartis’ LDK378, has just begun enrollment for a phase I clinical trial. Studies have been done in the lab regarding my secondary mutation’s responsiveness to this experimental therapy, and it looks to be a good match. There is yet the possibility of an HSP-90 inhibitor or Alimta.

After my appointment I held it all together until I saw Marguerite, the head trial nurse. Then the tears flowed, as Marguerite is the kind of person who makes you feel as if you’ve entered a safe harbor. She hugged me and acknowledged the ‘suckiness’ of the report, but also reminded me that I still had significantly less cancer (perhaps 50%) than I’d had when I’d gone on trial. And now, instead of one wild card option, there were several. Not to mention the fact that I had this incredible team scouting out all the possibilities. Sarah popped in for a hug too and then Irene came in with her accupuncture kit and said she’d ‘fix me up’. I told her I’d take strong and brave. I don’t know if it was the needles or her companionship and conversation, but I was starting to feel better.

Starving, I tucked into my hospital ham and cheese sandwich and better than average tomato soup, followed by a red velvet cupcake made by Marguerite. That cupcake was several mouthfuls of happiness.

And then I gathered up my gear and composure and headed home. And I was okay, until I said goodnight to Peter and he started to cry. Damn.

I tell you what. No matter how ‘routine’ this all becomes, it can still kick the stuffings out of you at times. I will pull it all together, because that is what I do. But today I’m feeling a wee bit of battle fatigue. There is no other way to put it.

We see the light(s)

About that rash; Pete and I have decided without benefit of counsel that it was indeed poison ivy that he (just couldn’t help himself) scratched, and which then became a mild staff infection. Nothing a little hibiclens won’t take care of. So, bugs indeed, but of the bacterial sort.

David is back from his travels and we slept at our new  home again last night. I even cooked a meal and took a bath in the jacuzzi. Really feels like our house now. 
In about an hour I shall head into Boston (and it will take me at least one hour and fifteen minutes less than what I am accustomed to) for my scan results. It’s been four months and so I am just a wee bit anxious. I did see 11:11 on the clock yesterday. I regard that as a positive sign or lucky omen if you will. Let’s hope so.

Tonight and tomorrow (if I can wrestle the air card needed for computer reception at this point) from my fourteen year old, I will get caught up on Colorado. After I share the results of my appointment today.

Back to the present (momentarily)

I’ve much more to say about my trip to Colorado, but first a quick update on the moment.

The radio silence from my friend Guillermo was beginning to worry me. I pestered him into a response, and as he sent it via email, I asked his permission to copy it here (for those of you who also keep track of his whereabouts):

Dear dear Linnea your black sheep is back recuperating from burning under radiation.
The April vacation in Mexico was abnormal for me, weak from chemos I expend all the time in the hotel sun tanning like the iguanas in my roof, the pool was too cold for me and for the first time in my life I had trouble floating, my lungs couldn’t expand and I was short of breath for swimming. With all my pills I could not take advantage of unlimited free drinks, what a waste of margaritas.
Improving now I am surrounded by examples of hope, just imagine the portuguese sailors looking for the cape to go to the Indies and unknown to them around the world.

#1.- Mourning doves nesting in a flower pot in my patio, 2 years ago they nested at the end of a hot gutter but the ready to fly babies drowned in a sudden rain flood; last year they returned to a different corner of the patio, unfortunately one night the eggs disappeared; this year they are back under my protection 5′ above ground, I have to watch Honey my dog… but there is good hope.

#2.- Jack Layton give us big hope becoming leader of the opposition with record votes for the first time in history of Canada dominated by conservatives and liberals, he campaigned in crutches (see left arm) and a mysterious hip operation, he has prostate Cancer… but there is good hope.

#3.- Lorraine, Silas, Peter letter and you putting all togheter but moving in bits and pieces, one car load at a time, there is good hope.

#4.- Ice-cream man is here in a cold spring day! there is good hope.

#5.- A blogger that goes with class, there is good hope all around.

( ) X X Guillermo

Life continues at a frantic pace here. I had my first scan in four months on Wednesday (results this coming Tuesday), and on Thursday I led a workshop at Peter’s school. I had a small group of students (and one instructor; bonjour Madame!) and in the brief amount of time allotted (45 minutes), they each created a personal ‘map’. The results were really intriguing:

That afternoon I took Peter to the doctor with what we presumed to be a bad case of poison ivy. We came away with a hesitant diagnosis (the nice young pediatrician said they didn’t have poison ivy where he came from) and a prescription for a steroid ointment.

On Friday Peter, Buddy and I (David is away on business) packed our bags for our first overnight in the new home. Immediately after arriving we donned protective rubber boots and traversed the property scouting poison ivy; there is indeed a fair amount of it.

On Saturday Peter awakened with the bad news that the night before his laptop had picked up a virus. The rash had also spread and he began to worry that perhaps he had scabies or bedbugs. Oy vey.

We dropped the infected laptop off with the Geek Squad. Peter is yet sleeping, so I don’t know the status of his rash. I’m still thinking poison ivy, but time will (perhaps) tell. Let’s hope it is only the computer that has bugs.

The past two weeks (in chapters)

This move us ours is no one day affair. Rather, we are doing it in bits and pieces, one car load at a time.  I have had not a moment to do anything else, such as write. Which is unfortunate, as I’ve got a lot of catching up to do.

So, like any task that is somewhat herculean (like moving), I am just going to have to break it down so that it is more manageable. Consider this brief entry chapter one.

The video above (and the one below) are short little clips that my son August filmed while I was in Colorado. I was attempting to make a short piece for an online site, and Aug was helping me out a bit.

Hanging out with August was one of the highlights of my stay in Colorado. Barring our trip to Sweden, I’d not spent any quality time with this kid since he was seventeen. I stayed for in Ft. Collins for five days, and I got to see August every single one of those.

We ate meals together, rode bikes, went out for coffee, checked out his art, listened to his music and just enjoyed each others company. On the last morning we were laying side by side in the sun on a trampoline and he said, “I don’t want you to go”. And I didn’t want to.

Jemesii, August and Peter are my everything. Each of them; braces, tattoos, green hair and piercings notwithstanding, is to me, perfect. The very, very best thing I’ve ever done is to become a mom. I am most content when all three of my children are by my side. However, with two of them grown, that doesn’t happen very often anymore.

And so I had to say goodbye to Aug, for now. Being with him was like butter on toast. Simple and perfect.

Mothers Day

Today’s post is going to start with a story about a very special mother.

Lorraine Kerz lost her son Silas to lung cancer when he was only 29. That was almost three years ago. In the time since, Lorraine has created a non profit for young adults with cancer, Sy’s Fund, lobbied for compassionate use of medical marijuana, organized  benefit golf tournaments and live music events in his honor, created a short documentary, and most recently, an exhibit of Sy’s photos.

What follows is a brief description Lorraine wrote to accompany the exhibit:

After his cancer diagnosis, Silas continued his journalistic work; first bravely documenting his life on video, and then turning to photojournalism shortly thereafter.

Through his photographs, Silas documented everything from the raw emotions of family members to the beauty of spring blossoms flowering as his young life waned.

No mother should lose a child to lung cancer. Lorraine, who I had the privilege of meeting at the Lung Cancer Alliance advocacy meeting in DC, is beyond amazing. Her incredible strength, courage, passion, love and devotion to the memory of her son Silas seemingly show no bounds.  As does her determination to make a difference; exactly as Silas would have done if lung cancer hadn’t cut short his life. You are one of my heroes, Lorraine.

And now another perspective. At the close of the National Lung Cancer Partnership advocacy summit in Denver, a group of us were discussing tactics to engage the media in our fight against lung cancer. One dynamic young woman, Sarah, proposed that we all submit letters to the editors of our local papers about the personal impact of lung cancer on Mothers Day.

I realized I would never make the deadline for such a project, but instead asked my 14 year old son Peter to write a ‘letter to the editor’ which I would then publish in my blog. Here is his heartfelt correspondence:

I have always had a lot of denial about cancer.  As a little kid, I just wanted to close my eyes and have it disappear. But it wouldn’t, and consequently, it really changed my way of living.

To say that cancer ruined my early life is a stretch, but certainly not a big one.

As a little kid, I was sad and confused a lot of the the time, and my mum was the one who helped me through it. SHE was the one with cancer! Be that as it may, she was always there to listen, to talk, and to hug.

That’s why I’m writing this. Happy Mothers Day mum; you were always there, and you always will be. You and me are gonna stomp this cancer into the the ground like the horse shit it is.

P.S. Are expletives okay?

Big Tease

My apologies for the silence. It has been an occasion filled few weeks and I feel as if I’m on spin cycle. The photos are just a hint of all that has been going on, and in the next few days I’ve got a whole lot of writing to do in an attempt to catch you all up.

However, first I’ve got to get some boxes ready for the moving trailer David will be pulling in with any moment now. Stay tuned.