Monthly Archives: October 2010

A little local color and how about that biopsy

Wednesday morning I had a 7 a.m. check in at radiology. That necessitated a 4:30 a.m. departure time, and and although traffic was at a minimum (until, amazingly, we entered Boston), we came yea close to hitting a deer. It would have been a bad way to start the day, both for the deer and ourselves.

A few minutes before eight, we were led into the procedure room by the surgeon, who then carefully explained (complete with drawings, I love that) what he would attempt to do. As I had already been made aware, this was going to be anything but a slam dunk. The tumor that would be targeted was in an awkward position, not only within the lung (very peripheral), but in relation to where the needle would have to enter. There was an anatomical fissure within the lobe that could not be crossed and the exterior entry would need to be made through my (ouch) breast. A CT scan would be taken every step of the way to make certain that the needle was heading toward the target, and the team would be watching for a pneumothorax (partial lung collapse) as well as any excessive bleeding; both possibilities. Should either happen, it might be necessary to abort the procedure.

This would not be a needle biopsy, but a core; same idea but slightly different mechanism for retrieval of tissue (sort of like a spring loaded harpoon, only tiny). The list of potentially adverse side effects was gone over (I’m difficult to scare that way anymore) and once again I was told that this may or may not be successful.

Bring it on, I said. Come what may (and I was feeling very optimistic), this was going to be a hell of a lot easier than open chest.

And then my favorite part. I lay down, was wrapped in warm blankets and Velcroed to the table (big ol seatbelt, good thing I’m not claustrophobic), and just as I’m beginning to get to know the two attendants, the magic cocktail starts to flow through my IV. “This is going to be a brief relationship…” I say, and the next thing I know, I am on my stomach in the recovery area.

This is perhaps the hardest part. Groggy yet, I don’t know whether or not it all progressed as planned, but I am not allowed to speak or to move; as I am still at risk for a pneumothorax.

Soon the surgeon stops by, and I’m pretty sure I hear him say that everything went smoothly and he was able to retrieve a lot of tumor. At one hour post op I am wheeled in for an x-ray, and then again at three hours. At some point Alice (Dr. Shaw) stops by and grabs my hand. And then, finally, the three hours have passed, and I can turn over and sit up.

David is called into recovery, and the surgeon explains that, although far from straightforward, the operation was a success. My pleura (lining of the lung) had been tacked down, a not unexpected situation after having had several lung biopsies as well as a lobectomy. Oddly, this confers an advantage as far as making a pneumothorax less likely, but it would have made the open chest more difficult.

There had not been much hemmhoraging, and what I thought I’d heard him say was indeed true; he had been able to retrieve several cores. Yippee! I celebrated with a turkey sandwich and a ginger-ale, and then, still a bit woozy, David pushed me across the street to Starbucks in a wheelchair, where I had my first coffee of the day.

When we arrived home around 5 :30, I checked my email and noticed a message from a producer at ABC. She had ‘checked in’ with me the day before, and now she was requesting that I get in touch with her ASAP for an interview to air on the World News that evening. Crizotinib is in the news again, as Pfizer has released more data relating to phase two of the clinical trial (click here). I emailed the producer back and explained where I’d been that day; she immediately responded that there would be a short piece on the news anyway, and they had lifted a photo from my blog. So, those of you who think you saw me on the World News with Diane Sawyer Wednesday night, I think I did too! What a day.

On Tuesday I have my appointment with the trial team, including Alice. This morning she sent me an email saying that the pathologist had determined that there was plenty of tissue for the studies. So, the more conservative approach seems to have worked, and yesterday I was able to go hiking in the woods. Now I just need to keep my fingers crossed for some answers to our questions as to why the cancer is no longer completely responding to crizotinib.

It’s really fall

As we rounded a corner on the way to the bus stop on Thursday morning, I had to slam on the brakes to avoid hitting a wild turkey. It was one of a large flock (herd seems more appropriate) of turkeys crossing the road, including a very large tom. Fall in New England.

I’ve been spending a good deal of time in the woods photographing the leaves; I hope to exhibit large format prints of some of the many close-ups.


A week and a half ago, I was a passenger on my neighbor Arthur’s harley, for some open air leaf peeping. We logged three hundred miles on an absolutely sparkling day; it was so much fun.

One of the first times I saw Arthur, he was riding a sit down lawn mover while wearing a big sombrero and a bear claw necklace. I decided he was likely a character. And then I met his lovely wife Betty, who was battling breast cancer. Betty and I really bonded, and when she passed away last year, I was heartbroken. Arthur was devastated. This summer he bought the harley (Betty’s name is painted on the back) and got his motorcycle license. Arthur is 73, although he doesn’t look a day over 60. And the bike has been good for him; he says he feels like a kid when he’s riding.

Foot of Mt. Washington; pretending I'm at the wheel

So for some time now Arthur’s been saying, “if it’s alright with your husband, I’ll come pick you up for a ride”. Heck yes it was alright. Seven hours and three stops later, I limped off the bike; saddle sore but exhilarated. Thank you Arthur!

A week ago I met with the surgeon. It had been our hope that the biopsy could be performed via VATS (video assisted thoracotomy surgery), a more minimally invasive surgery. However, due to (once again) the ground glass nature of my tumor (versus a solid entity), the peripheral location, as well as the fact that it was probable that there would be scarring and adhesions from the previous lobectomy, he was not confident that it would be possible.

It was his suggestion that I have a CT scan prior to surgery, and that using the image as a guide, a mark would be placed on my chest above the tumor. He would use this site to attempt a VATS wedge resection, but if it proved too difficult, he would need to fall back on open chest surgery.

I have great confidence in my surgeon (Dr. Doug Mathisen), but the idea of open chest surgery again made me more than a little uneasy. Surgery was scheduled for the following Friday (yesterday), but after a conversation with Alice (Dr. Shaw) on Monday, she agreed that open chest was a lot to go through for a biopsy. In addition, the sinus infection I’d picked up after Sweden tested positive for a gram negative bacteria (Pseudomonas), and I was still on antibiotics. Even a vague possibility of residual  infection entering my chest cavity was a definite con.

So, despite a higher than usual probability of failure and/or post biopsy bleeding, I will have a needle biopsy on Wednesday. All things considered, it still seems like the most reasonable choice. I hope it is successful, and if not, the more radical approach is yet an option.

Sweden all in one

It is absolutely necessary that I sit down this morning and finish writing about Sweden, because I’m getting backed up, as (of course) new things are rolling here as well.

Picking up where I let off…we didn’t go to the little house in the country for the full weekend with Anja and Ingo, as Anja awakened with a fever on Friday morning. I let August sleep in, while I went to work on the internet to secure a hotel for the next two nights. It turned out to be surprisingly easy, perhaps now that the big Diabetes Meeting was concluding. I booked us a room right in the old town, Hotel Rica Gamla Stan.

As soon as we’d checked out, I decided that we would go directly to the new lodging to see if we could stow our bags there. It was a good thing, as they had us in a room with a double bed. Aug loves his mom, but wasn’t into sharing a bed, so they found us a tiny single into which they mashed a cot. They also let us check in early, which worked out well, as August was feeling the need for one more day of rest.

Our room was on the third floor, up a curved staircase of limestone pocked with aquatic fossils. It overlooked a narrow alley, and we could see into the windows of Acne, the fashion house (of interest to my fashionista daughter). August settled in, and Ingo and I went to the open house at IASPIS, which is a government funded artist in residence program in Stockholm. I was intrigued not only by the installations, but also by the level of support given to the visual arts.

I returned to fetch August for dinner, and discovered he had been busy looking online for a good place to eat (access to the internet proved to be a great tool in traveling). There was promising restaurant a short walk away, Den Glydene Freden, where we could sample authentic Swedish dishes. It turned out to be an extraordinary meal (although pricey); definitely a highlight of our trip.

Breakfast at the hotel in Gamla Stan was a revelation, as we lacked for nothing. I was intrigued by the help yourself bottles of vitamins, and the Swedish pancakes were delicious.

After breakfast we boarded the train for Uppsala, as I wanted very much to see Hammarsby, the residence of Carolus Linnaeus. Ultimately this day turned out nothing like we’d planned. It was cold and raw in Uppsala, and after purchasing tickets and waiting at a stop for a bus, the driver helpfully suggested that it was rather late in the season to see Hammarsby, as we would be dropped a significant distance from our destination, would arrive only shortly before closing, and would have to wait another four hours in the middle of nowhere for the next bus. It didn’t take much convincing, and in the bus station (again, so very civilized) they refunded our ticket price. Instead we walked over to the Museum Gustavianum. Much to my delight, they had some cabinets of curiosity on display (one of my overriding passions), and, although I vowed to come back, I left satisfied.

On Sunday, Anja was feeling better, and they picked us up in their little peugeot for the drive to the country.

This was such a magical day for me. They prepared a wonderful meal of salmon and boiled potatoes and fresh greens over which we lingered, and then we bundled up for a walk in the woods where we marveled at the mushrooms, and August and I played with Otto in his wonderful little bark hut (Made by Ingo as a prototype for an artwork; Ingo is also involved with the Tree of Heaven Woodshop in Detroit).

It was quite late in the day when we returned to Stockholm, and our friends bid us goodnight at the hotel Anno 1647, where we would now be staying.

On Monday August indulged me in my desire to visit more museums, including the Vasa Museum, where you view the remarkably well preserved wreckage of a Swedish warship that sank on its maiden voyage in 1628, only to be brought up again 300 years later. For a treasure hunter such as myself, it was mind blowing.

That evening we had yet another splendid dining experience, suspended above the city at the Gondolen. Warm rose hip soup and lavender creme brulee for dessert…

On Tuesday several more museums, including the Historiska Museet, where we were awed by the vast plunder of Viking artifacts. After a (banal,  it really is all the same) meal at Burger King, we met up with Anja for coffee and a walk around Sodermalm. Too soon, it was time to say goodbye (for now) to this person that I had only just met, but somehow felt as if I’d known forever.

That evening,  we were in for a real treat. We would be staying in a ’boutique’ hotel that I had read about in a chichi travel magazine, Hotel SkeppsHolmen. We were going all out for this one night, as I had booked us a large room with sea views. And? It was incredible. Located on an island, we took a boat from Slussen. Unimposing from the outside, but gloriously spare and hip on the interior, the hotel is within walking distance of the Moderna Museet (to which they provided complimentary tickets). I was able to get a dose of art before bedtime and August was content to hang out in the luxurious digs, wearing one of the plush terry bathrobes folded neatly in the washroom. He took not one, but two showers in the ‘rain shower’, and we both slept straight through the night on incredible duxiana mattresses. The next morning, breakfast was sublime.

As much as we would have liked to linger, it was our final day prior to an early morning departure. One last museum, The Royal Armoury, turned out to be a favorite. It displays an eclectic collection of not only armour and weapons, but artifacts such as the bloodstained clothing worn by Karl XII when he was killed in the trenches in Norway in 1718, as well as several stuffed and mounted horses belonging to various kings.

A quick lunch of pizza, the aforementioned Ice Bar, and we bid adieu (farewell, hejda) to Stockholm. We will return!

Quick break to the moment!

I awakened this morning to thick fog: our windows all looked as if they were covered in rice paper. As the sun came up, it not only began to clear a little, but the light was such that I noticed the railings of our deck all had a latticework of tiny webs. When I took Buddy out for his morning walk, it became apparent that there were silky threads everywhere. This led me to wonder whether or not they are always present, and we simply don’t notice them. Fascinating!

Sweden: part three

On the morning of day three, it was necessary to check out of our lovely hostel. Hotel hopping has its benefits, but a definite downside is where to stow your luggage. Although we had each traveled light, with carry on bags only, we wanted to walk around unencumbered. We’d spent the first two days on foot (actually a very good way to orient oneself), but we now tried out the T-bana, Stockholm’s version of the tube or metro. We quickly found that each station was a visual delight; uniquely decorated with gorgeous tile work as well as painted walls.

We got off at Central Station, where you can rent lockers in which to stow your belongings. It was another minor comedy of errors, as we attempted to A. cram all our stuff in one locker and B. figure out how to actually pay for and lock said locker. Our lack of familiarity with swedish currency compounded our difficulties, but we were not alone as it seemed to be confusing for almost everyone. One word of warning; do not lose the little slip of paper which contains not only the number of your locker, but the code that must be punched in to open it again. It would pose some great difficulties if you should.

We then spent several hours wondering around Gamla Stan, the medieval section of Stockholm. It is endlessly charming, with one photo opportunity after another.

Unfortunately, August was still feeling crummy, so when three o’clock rolled around, we retrieved our bags and got on the commuter rail to head to our next lodging, Rica Talk Hotel, located in the suburbs. It is a short walk from the station and situated right next to the convention center, where they were holding the annual meeting of the European Association for the Study of Diabetes. Although I started looking a month prior to departure, it had been very difficult to book rooms for the beginning of our trip. Now I understood why, as the meeting coincided with the first half of our stay.

Rica Talk was the least charming of the hotels on our trip, and not ideally located either. However, it was reasonably priced and very modern. This was the evening that we were to join Anja and her family for dinner, but August decided it would be better for all if he stayed behind, so he camped out in the room. I hopped back on the train and then caught a bus to Anja’s.

Once I arrived at the stop she’d told me was closest to her home, I hadn’t a clue how to find her street. A helpful passerby suggested I try asking at the florist, as they knew where everything was located. Brilliant idea, and I bought a bouquet to take to Anja’s as well.

When I arrived at Anja’s, she introduced me to Otto. Although he did not speak English, and I no Swedish, he was very tolerant of our lack of a common language, and managed to find other ways to communicate. As he showed me a toy car that was missing a wheel, he used a word that I was indeed familiar with: kaput.

Anja served a wonderful meal and we settled into getting to know each other better. After an hour or so, we were joined by her husband Ingo. By the time we’d finished our delicious dessert, I felt as if I’d known this warm little family for years. I was sorry August couldn’t join us, but the next afternoon, we would all attend an art opening together before heading to their home in the country for the weekend.

When the bus for my return trip pulled in, I attempted to purchase a ticket, only to learn that you couldn’t buy them on the bus, but rather must get them ahead of time (7-Eleven, which is everywhere in Stockholm, sells them). In most of the places I had travelled, I would have been out of luck. As a rule, Swedish people exhibit a remarkable civility, and the bus driver commented that it was very late and that I could ride without the ticket. Amazing.

A misappropriated truth and more about Sweden: part two

But first…even though I promised I would only talk about Sweden, I have to tell you: (as this is his holiday) Columbus did not discover North America. And I’m not talking about the fact that the Vikings (or any other marauders/explorers) may have been here 500 years prior to 1492.  You simply can’t discover some place when people are already living there. To suggest otherwise is insulting to Native Americans and I (apologies to my Italian friends) consider this ‘holiday’ morally reprehensible.

Now that I got that out of my system, more about our trip:  The first few days after our arrival, August and I spent a fair amount of time just figuring out the basics. As I mentioned before, we began our stay with two nights in a very nice hostel, the STF Fridhemsplan. The commode and showers were communal, but we had a private room with two twin beds and a little flat screen TV, as well as free WIFI. When you check in, unless you’ve packed your own, you pay extra for sheets and towels. Everything is very spare and clean, and it is necessary to make up your own bed (as well as strip it upon departure).

This is where we made out first cultural misinterpretation. Swedish (perhaps European in general; when traveling in my youth I only had a sleeping bag) beds and bedding are just a wee bit different from ours. The beds consist of a large box frame with a very thin mattress on top (no springs as far as I could tell). They look as if they might be quite uncomfortable, but in reality, we found them vastly superior to the box springs and thick mattresses we were familiar with.

On top of each bed was a neatly folded comforter. The sheets consisted of one flat sheet and two sewn together in a sort of sack that we referred to as the swedish taco. We ended up placing the flat sheet down first, and then crawling into the taco before placing the comforter on top. It wasn’t until we arrived at our next hotel, where the beds were already made up, that we realized we were supposed to tuck the comforter in the taco (or duvet, its proper name). Ha!

Quite ingenious really, as you never come in contact with anything but freshly washed linens:  in an American hotel the first thing I alway do is to remove the bedspread, as they don’t actually wash them each time. Nasty!

So this is as fine a time as any to say that one of the things I really loved about Sweden was how clean it was. For better or worse, (and despite some of my dirty habits, like foraging in dumps, flea markets and thrift stores), I have always had a thing about being clean; to the point of suffering a fair amount of derision in my time at the hands of those in my inner circle. Wouldn’t have happened in Stockholm, where I fit right in. Even the streets were kept very clean and rubbish free and it reminded me a bit of Disneyland (in a good way), where there is always someone walking around with a dustbin, picking up litter.

And then there is breakfast in Sweden. Truly a smorgasbord, (and included in the price of the room most of the time) with a wide selection of meats, cheeses, breads, museli, yogurt, fruit, cucumbers and tomatoes, juice and good, strong coffee. The quality of these offerings varied somewhat from place to place, but never the quantity. As I always wake up hungry, and breakfast is my favorite meal, I was enamored.

As August was still feeling lousy, our first day we spent walking around Stockholm center. By day two, we had some specific goals. One of our primary tasks was to find an adaptor for our laptops. August would be communicating with his girlfriend, Laura, via facebook and Skype, and he was already suffering some serious withdrawal. We went to several shops before we found what we needed, and then we walked over  to the Stockholm Tourist Center, now conveniently located across from Central Station. It is a must stop for anyone unfamiliar with the city. Not only does it have a plethora of brochures, catalogs and maps, you can also speak to the lovely people behind the counter for more specific information (be sure to pick up a number for the queue as soon as you enter). A Stockholm Card can also be purchased here; a good option if you will be visiting several museums and riding public transport over a period of 1-3 days.

But back to day one. By the afternoon, August was needing a nap, so so we retired to the hostel. I  was working on my blog in the lobby when I got an email from my friend Anja saying she would zip over on the bus for a quick rendezvous.

Anja and I became acquainted through an online support group for lung cancer. I ‘friended’ her, and we began an email correspondence. It was almost a year ago when I told her of our plans to come to Sweden. She impulsively invited me to her upcoming birthday party. I requested a rain check, and when I told her that August and I would be coming in September, she asked us not only to join them (her husband Ingo and their son Otto, who turns three today!) for dinner at their apartment, but to also accompany them to a summer house on the archipelago that they are renting from a friend.

Anja has also been reading the blog, so she felt in a way as if she already knew me. When she walked into the lobby we embraced for the first time and began what quickly evolved into a truly magical connection.

Funny; it was as if we were set up on a blind date based solely on the fact that we both had advanced lung cancer  and I wanted to visit Sweden and she lived there. As it turned out, we would have become fast friends under any circumstances. After I arrived back in New Hampshire David asked me what was the most exciting aspect of my trip. Everything was exciting, but in addition to sharing this experience with August, meeting Anja and her family was the most special.

About that scan visit…

The good news is that there were “no significant change(s) in multiple solid and ground glass nodules in opacities consistent with multifocal lung cancer.”

Also noted: “Interval development of a new 6-mm nodule in the right upper lobe with ground glass halo which may represent atypical infection (such as of fungal etiology) or new focus of neoplasm (primary versus metastatic).”

When I had the scan done on Friday I was in the thick of a sinus infection. So I am very hopeful that the 6-mm nodule is a result of infection and inflammation. If not, it would seem to have popped up from nothing, which is of course unsettling.

Since our last visit, Dr. Shaw had reviewed all of the scans from the past twelve months, and at this appointment she placed them side by side for me. Although she feels that my cancer is behaving in a fairly indolent fashion, it is nonetheless persistent. The difference between my most recent scan and that from a year ago is striking. So we talked about the benefits of getting a biopsy now, while I’m still feeling good, rather than later when shortness of breath will likely become more of an issue.

The purpose of this biopsy is not to confirm malignancy, as there is really no doubt that we are looking at metastasis. Rather, it is to gather genetic material in an attempt to ascertain why my ALK mutation has become resistant to the crizotinib. In addition, it may be possible to determine which line of treatment might be indicated as next in line.

We discussed the pros and cons of a needle biopsy (much less invasive but also able to harvest significantly less viable cells) and a wedge resection (major surgery, but a greater return on genetic material). It was decided that the needle biopsy would be my first choice. However, after discussing my scans with the radiologist who would perform the biopsy, Alice (Dr. Shaw) called me to say that there were two significant concerns:  firstly, that because of the peripheral location of my cancer, it would be very difficult to successfully position the biopsy needle in order to zero in on the cancerous nodules, and, secondly, that due to the diffuse nature of BAC, the possibility of a post biopsy hemorrhage in my lung might be as high as 20%.

She felt that the combined possibility of negative side effects with an uncertain return made this scenario less than optimal. So, next Friday I will have a consult with the thoracic surgeon to discuss a wedge resection.

Although I was all too aware that another biopsy lay in store, I was hoping to avoid surgery. A hospital stay, general anesthesia, recovery. I’m whining a bit, I know, and it’s not attractive. For some time now it’s been pretty easy for me to visualize that I have cancer ‘lite’ and as a result I’ve indulged in several fantasy scenarios for the future. Lots of art, travel, skiing…cancer is messing with my plans again.

Whining aside, I’ve had it pretty good (poor grammar, I know, but concise and to the point). This is just another bump in the road. And besides, I just got back from Sweden! So, I promise, in the next post that is all I will talk about. Happy Friday.

More than pretty pictures: August and Linnea do Sweden (part one)

The picture is of August standing outside the Absolut Icebar in Stockholm, a rather cheesy version of my own ice bar fantasy (which takes place in a genuine ice cave rather than a refrigerated room, and we wear furs instead of the synthetic capes they slipped over our heads before we entered). It was our last stop in Stockholm and we toasted our wonderful adventure with vodka sipped from cups made of ice. And then we said goodbye.

When our plane finally landed at Logan airport on Thursday afternoon, it immediately became clear to me that I’d developed a sinus infection. August had been under the weather with an upper respiratory infection at the start of our trip, and inevitably I had contracted it as well, albeit a milder version. I am prone to sinus infections, and flying after an upper respiratory just about guarantees that one will develop. Although never a fan of feeling poorly, I was more than grateful that I was able to put it off until we were back in the states.

I hit the sack early and was up by 4 a.m. on Friday for a trip into Boston for a scan. After that was done, I slipped over to the Ear Nose Throat doctor with the hope that they could squeeze me in. Remarkably, they did; I got my prescription and was on the road again.

By evening it was all catching up with me, and for the past few days I’ve basically been in recuperation mode. However, I have so much to say about our brief sojourn; I really need to get started.

Going to Sweden was only half of what this trip was about. August and I have not spent this much time together in seven years. And I have to say, it was a  huge success. We had always had an easy camaraderie, that is, until he hit his teens. Aug starting smoking weed when he was in eighth grade. Lots and lots of weed. And cigarettes, and alcohol.  Although a pretty liberal person on most fronts, I’m not a fan and particularly not when it’s a kid (my kid). I wasn’t having it, and tried a variety of (well intentioned) but ultimately unsuccessful tacts. From counseling, to drug testing and yup, I even called the police once. It was bloody hell.

It was August who finally said enough. A month into his senior year of high school, he threw a few things into some boxes and moved to Colorado to live with his father. My heart was broken, but I also had to respect his determination to take another path. Perhaps predictably, within a month he wanted to come back. I said no.

August has really grown up (and I think maybe I have as well). He gave up the cigarettes three years ago; thereby earning that trip to Sweden. He still smokes pot (pretty accessible now in Colorado) but in moderation. Same for the alcohol. And, he’s been able to forgive me for my often misguided attempts to straighten him out. He’s incredibly stubborn (a trait I grudgingly admired) and he had to do things his own way. He also has a big heart, is terribly charming, and can be a ton of fun. Perfect travel partner.

In a few minutes I’ve got to drop Peter at the bus stop and drive to Boston for my scan results. Wish me luck, and I’ll pick this thread up again later.

Stockholm: last (group) of images

(Almost) one last look: Stockholm