Monthly Archives: July 2009

MGH and genetic testing

The Cancer Center at Massachusetts General Hospital in Boston is where I receive my care.  At MGH, all primary lung adenocarcinomas are now routinely tested for mutations.  This is a very positive step toward a more personalized approach in the treatment of lung cancer.

A diagnosis of cancer is a double edged sword.  Traditional treatments have generally made the patient feel even sicker.  When I was diagnosed over four years ago, surgery was the first step.  I had a lower left lobectomy, which was the removal of the lower lobe of my left lung.  This was a very invasive procedure which took weeks to recover from (It should be noted that now surgeons are often able to perform VATS, Video Assisted Thoracoscopic Surgery–which is less invasive). It involved the spreading of my ribcage as well as removal of lymph nodes and bone for biopsies.  I spent days hooked up not only to an IV, but to a machine that removed the fluid from my lungs via two tubes in my back.  The incision for the lobectomy was almost a foot long, and although it was very skillfully done it took weeks to heal.

After nine days (my lung partially collapsed complicating things a bit) I returned home feeling as if I’d aged 40 years.  Because of my incisions, it was impossible to sleep in any position other than upright. We actually bought a lazyboy–rechristened the lazygirl, on the way home from the hospital for this purpose. My body was dealing with bone, muscle and nerve damage as well as the loss of a major organ.  No picnic.

And then–7 weeks later–chemo.  Even though I was staged a IB–my oncologist felt that the size of my tumor (5cm) dictated the necessity for adjuvant chemo.   I was given cisplatin–a platinum based chemo–in conjunction with taxotere. Cisplatin is a particularly rough chemo (and lung cancers are notoriously resistant to chemo), but given my younger age and relatively good health, it was felt that I could tolerate it.

The infusions took about 5 hours and were administered every three weeks for four cycles.  The taxotere infusion lasted an hour, and during this time I would keep my hands immersed in a bowl of ice.  This was a strategy suggested by the infusion nurse (Lisa!) to help prevent the neuropathy often associated with taxotere (which was also the chemo responsible for my hair loss).  It might have worked too–although I do have noticeable neuropathy in my feet–there is very little in my hands. By the time the cisplatin had all dripped into my veins, I would begin to feel out of it.  Nausea was not nearly as big a problem as I had feared. The anti nausea drugs worked quite well (until the 4th cycle) and made me sleepy too–and I certainly didn’t mind sleeping through as much of this as possible.

We would return to the hospital the next day for a shot of neulasta.  I can honestly say that much of this time I remember only vaguely–it was as if a heavy fog descended on me.  I would feel pretty awful in general for the first few days and only gradually get my strength back, and then it was time for another round. The side effects tend to intensify with each cycle, and by the fourth cycle I was struggling.  The foggy feeling persisted for almost a year–I’ll be sure to post on chemo brain at a later date.

I don’t want to scare anyone.  Surgery and chemo were difficult, but they were doable and I have long since recovered from most of the side effects (not including the removal of so much of my lung).  However, I think it is also fair to say that these treatments were hard.  Wouldn’t it be great if there were other options, like maybe a pill you could take?

This brings me back to MGH and genetic testing.  The objective of personalized medicine is to determine which treatments might be most effective for a patient before they are administered.  An unfortunate aspect of some traditional therapies (such as cisplatin) has been that they are not selective in approach and that the effect is systemic–you kill good cells along with the cancer cells. Targeted therapies, such as the clinical trial that I am enrolled in, have the potential to do less collateral damage.

Here is a link to the MGH web site where the genetic testing program is described:

The stories of two patients are highlighted.  One is myself.  The other is a gentleman that I have the pleasure of being acquainted with.  He has the EGFR mutation and his story is remarkable and an example of what is possible with personalized treatment.  Check it out.

Blast from the past

This past weekend, I hosted a mini reunion at our home with four of my closest friends from childhood. In high school we were good girls and good students.  We weren’t in the “fast” crowd, but it was certainly a fun crowd, and we have the memories and photos to support that view.

Vail 1978

Vail 1978

Connections between the five of us had been a bit sporadic in the last thirty years. Our high school has been irregular at best at organized reunions, and even when they were scheduled, not all of us have attended (that would be me).  So we just decided to have our own.  And what a time it was.  So much has happened in each of our lives since the year we graduated (class of ’77).   Between us, we have six kids,  a matching number of marriages, two divorces, and four deceased parents. One of us has never married but has travelled the world instead.  Four of us have advanced degrees and one of us is a corporate lawyer. One of us has been a co-recipient of a Nobel Peace Prize, another has struggled as a single mother.  We are of different faiths, from devout to athiest.  One of us has cancer.

Our experiences as adults have been radically different from each other, and yet our bond from childhood remains strong.  When we sat around the table that first evening, I couldn’t help but notice that we had all aged.  Oddly–that perception diminished the more time we spent together, and soon I was seeing us just as we were thirty plus years ago.  The first morning we stayed in our pajamas until early afternoon–again, just like the slumber parties of old.  Although David was still in Marfa, my son Peter joined us at times.  It was sweet to see him respond so warmly to my childhood friends.  He was genuinely sad when it was time for them to go, as was I.

It all went too fast, but as we parted we pledged to not wait so long before getting together again.  It’s a very good feeling to reconnect with people from your past and to realize that you would choose to be friends again if you had met just yesterday.  It is an affirmation not just of friendship, but of the choices you made when you were younger.

Meredith 2009

Meredith 2009

Connecting with others who have lung cancer

When I was first diagnosed with lung cancer I felt incredibly isolated. Everywhere I looked I saw seemingly healthy people.  I felt that none of them could possibly comprehend my fear, my sadness and my anger.  I desperately wanted someone to talk to who was going through the same things that I was.

At the hospital I was surrounded by others with cancer, but seldom would any of us speak to each other.   On my floor, I was almost always one of the youngest patients and this only added to my feeling of being alone.  On two different occasions I reached out to women with very similar diagnoses whom I had read about in the media.  I never heard from one of the women, and although the other woman did contact me, she didn’t carry through on a plan to meet for coffee.  I was leary of joining any support groups, and this only affirmed my position–I was too raw to weather personal rejection.

When I learned that my cancer was terminal, that sense of isolation only increased.  And then, quite by accident, I stumbled upon that world of support I had been looking for.  I was researching recurrent lung cancer on the internet and I came across the Lung Cancer Alliance Survivors Support Community.

It is an international forum where people with lung cancer as well as their caretakers can post questions and initiate dialogue with the other members.  It is available 24 hours a day.

In the beginning I would log on but only read the posts and comments. Eventually I joined the “conversation”.  Soon it became a daily habit that I refer to as my devotional.   It is a safe and nurturing place to share experiences and concerns. Participants are generous with their support and their knowledge, and no question is considered too frivolous (nor does it fail to evoke responses).  The only two subjects which seem to consistently provoke controversy are those concerning smoking/nonsmoking status as well as the amount of publicity and funding that goes to breast cancer (more on both of those subjects later!).

By participating in this forum I have enriched my knowledge about lung cancer. I have also been able to use my own experiences to get information out there to those who might not have it (get your tumor tested for mutations!)  I have made friends and have marveled at the opportunity to have dialogues with people all over the world.

For those of you who are interested, log onto the Lung Cancer Alliance site (an advocacy group dedicated to survivors of lung cancer) at:

Scroll down to LCA Survivors Community and press join.  It’s that easy and the degree to which you participate is entirely up to you.   In my case, joining this community has not only addressed my sense of isolation, but has made me feel more empowered.

One more sentimental journey before returning home

The party for my Aunt was a blast. It’s quite an accomplishment to reach your 80th year and my Aunt has done so in style. Happy 80th Claudine! Great to see my cousin Leigh and all her kids, and lots of other relatives including my mom and stepfather, three of my siblings and their families, and my 23 year old son August.
After the party, Peter and I drove to Ft. collins with my sister Bink and her family. I grew up in Ft. Collins but moved away almost 20 years ago.  Two days and three nights sped by as we spent quality time with family.  Seeing more of August was a highlight–as well as listening to some of the music he is making.  I don’t get to see enough of him and it is always fun to see what he is up to.

Yesterday Peter and I flew back to New Hampshire.  We live in a heavily forested area that is home to many wild animals.  In addition to the myriad birds (everything from bluebirds to wild turkeys), we have seen fox, coyotes, deer, black bear, fisher cats and even a moose in our back yard.  We have been gone for almost two weeks, and in our absence some of those animals have been attempting to homestead in our house.   A bag of trash had been inadvertently left in the kitchen, and had birthed a herd of fruit flies.  There was also a suspicious number of dead blowflies–meaning that one of those homesteaders was newly departed somewhere in our walls.  A trail of unidentified scat led from the living room to my studio (mice or chipmunks?) and a bat had taken residence in the umbrella over the table on the deck.  Time to evict them–but I can’t help but be impressed (and maybe even comforted) at nature’s ability to take back “civilization”.

This morning I picked wild blueberries and raspberries in our yard for breakfast.  I am already missing my family in Texas and Colorado, but this is a beautiful home to return to.

A special party in Boulder, Colorado

Peter and I left Marfa friday morning and flew to Denver, Colorado.  My brother John picked us up at the airport and the three of us headed to Boulder.  We met my youngest sister Ro and her husband Brian (my new brother in law) for dinner and then headed to my cousin Craig’s house for the night.   This was the beginning of a long weekend of reunions.  In addition to his wife Linda and their two children, my cousin Gage and his spouse Brenda and their two boys were there as well as their cousin (and old friend of mine) Ken, and his brother Steve (my new friend).

I grew up in Colorado–and there is a certain quality of light here that is different than anywhere else I’ve lived. You could actually say  that there is a different quality of life as well.  So many people are outdoors at any given time–and they all seem to be in motion.  Walking, running, cycling, and of course the winter sports when there is snow on the ground.

After breakfast we went on a short walk with the family dog and then a longer walk to a neighborhood swimming pool where we were joined by two other nieces.

Some of my fondest childhood memories involve summers at our pond with my cousins.  We swam, we boated, and perhaps most fun of all–we battled.  We made boats out of anything that floated and used our paddles to splash each other.   It was a bonus to swamp the other crafts.  All in good fun, of course.

As we swam and sunned I couldn’t help but reflect on a year ago.  Last summer my cousins and our families got together for a reunion.  It was particularly poignant, as we all assumed that it was the last time I would see most of them. None of us could have imagined that I would be sitting here with them again this summer or that I would appear healthier than I had in years.   It is a gift I never take for granted.

That evening we go to dinner and are joined by my aunt Claudine, friends of hers from California, my cousin Leigh,  my mother Evalynn, and stepfather Jim.   On Sunday there will be a big party to celebrate Claudine’s 80th birthday.  I am so glad to be here to help her celebrate!

And now Marfa

On tuesday morning we drove from Austin to Marfa. Texas is one big state, so it was a seven hour drive. Pretty country though.
We arrived in Marfa in the late afternoon. This is our home away from home and we come here as often as we can. It is a place both geographically remote and individual in spirit,  and it’s never hard to leave the rest of the world behind. And for a few days, I have. No news and virtually no contact with the outside world. Just the long lazy days of a summer that suddenly feels as endless as those of childhood.

A land shark in Marfa, Texas.

A land shark in Marfa, Texas.

Greetings from Austin

Howdy y’all. I’m posting here from Austin, Texas where I’ve been with my husband David and son Peter since Friday. I’ve taken a break from cancer the last few days as we’ve been busy swimming, eating and hanging with my sister Laura and her family.
The air is so hot and dry here it felt like walking into a sauna when we first arrived. After the cold and wet summer we have been having in New England, all this sunshine is like a miracle. I’ve gotta say, the locals are pretty sunny too–friendliness abounds. This is also a change, as people in the Boston area tend to be a lot more reserved. Perhaps it is a climate thing.
On Saturday night we joined the throngs of people who go to the Congress St. Bridge at dusk to watch the approx. 1.5 million bats emerge. That was so cool! Huge waves of bats fly out just beneath where you are standing. They are so close that you can hear the sound of their wings and even smell them–a rather sweet, dusky smell that was not offensive to me. Wave after wave of bats swirl up into the sky like swarms of bees or schools of fish. In fact, the experience brought to mind the time my daughter and I accompanied a beekeeper as they opened a hive, or the many times as a child when I would wait until the sunfish schooled beneath the raft I was standing on and then I would jump into the middle of them. There is something so powerful about being right in the middle of a large group of animals.
Yesterday we swam and boated on Lake Austin and another of my sisters, Diana, joined us with her daughter. At the lake there is a dock that is two stories tall and has a diving board on the second story. I spent the summers of my childhood swimming in a pond in Colorado and this was making me feel like a kid again. Not one to let a wild hair go unnoticed, I slipped up top and changed into my suit and jumped off the board before anyone other than Peter was the wiser. Quite a rush–although I never thought to plug my nose and breathed in a good deal of water. After the applause died down (kidding, but all assembled were surprised and impressed) I began to fret a little (silently) about whether I’d get sick from that water now in my sinuses. Hadn’t I read something about bacteria in lakes in Texas causing some brain virus? This really did go through my head. Just want you all to know that strong and brave is not always the mode under which I operate. I am in fact strangely paranoid sometimes that I am going to do something to screw things up–almost as if there is some sort of pressure and or obligation to stay healthy now. And in a way, there is.  The part about the break from cancer was a bit disingenuous.  Once you receive that diagnosis, cancer is seldom far from your mind.

fishing cousins

I have lost so many people I have cared about to cancer. You can’t help but feel a bond with others who are in this fight, and it is almost impossible to not take everyone’s wins or losses personally. Particularly now, that I am really in the frontline, I feel like a soldier and the loss of any other soldier just makes me want to fight harder.  Not a day goes by that I don’t think about those who lost their fight.  People like my Dad (pancreatic cancer), my brother in law Andy’s mom Jan (breast), My friends Jan (ovarian), Kevin (lung), Heidi (sinus), Betty (breast), my dear friend Melinda’s mom Sharon (ovarian), my friend Bill’s wife Andrea (cervical).  And then there are those who are still in this fight for our lives:  my mom Ev, my stepfather Jim, my husband’s sister Polly and aunt Penny, Greg, Stephanie, Karen, Nick, Diane, Karen, Kathy, Steve, Wendy… The list is far too long.

And yet:  there is something about cancer.  No matter how isolating that initial diagnosis is, you quickly become aware of how many people are in this fight with you.  I’m not just talking about our fellow survivors:  I am talking about everyone else whose life has been touched by cancer in one way or another.

We are not in this alone.

Trial Date

Yesterday was my big day at the hospital. Usually I make this trip alone, but today my husband is accompanying me as he has business in town. My labs are scheduled for 9:30 a.m., but a 6:15 am departure is necessary as it is impossible to avoid rush hour traffic at this time of day. As David is driving, I am able to sleep on the way in–always a treat.
Traffic is not too bad today, and we arrive at the hospital a little before nine. I say goodbye to David and head upstairs to the infusion wing to check in. After presenting my blue MGH card my plastic ID band, or my “jewelry”, is placed on my wrist. Sometimes it is obvious who is here for treatment, other times that fact is given away only by the plastic wristband.
There is a cart of donated novels in the waiting room and I replace the book I had borrowed and scan for any new titles that look intriguing. Infusion runs on schedule, and after a few minutes I am called. I am asked to verify my name and DOB and they check my wristband. I am then led to a little cubicle where I remove my shoes and am weighed. My blood pressure, heart rate, blood oxygen ratio and temperature are all measured. I am asked if I am in pain or fatigued. The fatigued part amuses me, as I have invariably risen at an ungodly hour to get here. I am tired, but this question refers to a different sort of fatigue; that which is brought about by cancer and it’s treatment, and so I answer no. A call is made to figure out which room is available for me, two (yea!) blankets from the warming oven are fetched, and I am led down to the part of infusion reserved for patients enrolled in clinical trials. I am put in my own room with a bed, shared bathroom, television and dvd player.
Now the fun starts (really). First is the meet and greet–as various members of my clinical trial team appear. First is Sarah, who always has a hug and a smile ready. I need to give her a urine sample, and then she does a blood draw. The technical term for all of this is PK’s, or pharmacokinetics. The purpose of this  phase I clinical trial is to understand what the trial drug does to a body, and that is in short, the definition of PK’s. Another applicable acronym is LADME, which stands for Liberation, Absorption, Distribution, Metabolism and Excretion, which is basically the pathway of the drug through the body.
In the first months of the trial, the blood/plasma sampling schedule involved several draws, and an IV would be inserted (more jewelry). Now Sarah is able to do it all in one shot. She, by the way, is an expert on the insertion of needles. If she were to meet you, within a few moments she would have visually assessed where your best vein was. No joke. This is my kind of nurse. When you get stuck as often as I do, you want it to be right the first time.
Several vials of blood are taken, as I am actually enrolled in two clinical trials. The second trial is for a technique developed at MGH that searches for very low concentrations of circulating cancer cells in the blood of patients.
Nastasha then comes in and collects my trial diary (I record the times of my morning and evening doses each day, as well as the time of the meal prior to the dose) as well as the containers for my pills. It is a good sign if they are empty, as it means no doses were missed. Nastahsa herself is going missing from my life soon, as she is going back to school to become a nurse practitioner. I am sad, but happy for her and we have pledged to stay in touch. It is amazing how close you become to the people who are in the business of saving your life.
Jose, who will be my new Nastasha, is not actually part of my team yet, but always comes in for hellos and hugs as well.
My oncologist, Dr. Alice Shaw, is early today as she has another commitment. First we go over the results of my scan. It is a good report–everything is stable. There are several little nodules in my lungs and one in particular that we are watching. It is unclear if they represent recurrent cancer or scarring, but the fact that they remain stable is reassuring. Alice then listens to my lungs, checks my ankles for swelling and answers any questions I have. I am one of those patients who is comfortable with more rather than less information, and she is very indulgent in this regard.
After Alice has left, I am visited by volunteers in pink jackets who offer me tea and toast–I take the tea. Soon Irene, one of my favorite people on the planet, appears. Irene is one the perks of my enrollment in this trial. She is part of the HOPES (Helping Our Patients and Families Through Education and Support) program at the hospital, and offers complimentary acupuncture to patients in infusion. I LOVE this part of my visit. She inquires as to what issues I would like to have addressed (stress, nausea, fatigue, pain) and I ask for the garden variety treatment. This involves three acupuncture needles in each ear, which she leaves in for 20 minutes. Invariably, I immediately feel more relaxed. Soon Marguerite comes in. If you were lost at sea (as I was when I started coming here), you would want Marguerite there. She is capable, wise, and kind. Her years as a nurse have done nothing to dull her sense of caring–she really does care deeply about her patients and inspires confidence. She has helped me address my fears on all different levels.
Now it is time for my dose. I am presented with a new diary and two pill bottles. Sarah has written the mg on the side in sharpie marker. The drug has no name yet, just a number, and Sarah reads this out to me each time, as well as confirming my name and birthday. I am given the tablets and some water and Nastasha notes the time of my dose. This concludes the official end of my trial day, although I linger a while longer just to chat.
My next stop is to see Mary Susan Convery, who is the thoracic social worker. When I  was restaged last summer, I quickly fell into a depression. I did not want my mental health to interfere with my physical health (they are so intrinsically linked) and my oncologist referred me to a psychiatrist. He prescribed an antidepressant (which I had taken before, but had been off of for 6 months) and also suggested that I talk to Mary Susan. I did not know that this was part of the role of a social worker. Mary Susan is both a resource as well as a counselor, and as her specialty is thoracic oncology, she is well acquainted with the issues I was struggling with. I have been seeing her for almost a year now, and I consider our visits  a critical component of my sense of well being.
When my appointment has concluded, I have just enough time to go to lunch before I must head over to Massachusetts Eye and Ear Infirmary for a checkup with an opthamologist. One apparent side effect of the drug has been a visual disturbance where I see light trails or ghostly shadows of objects in dim light. It is confirmed that my eyes are in good health, but that my problem is neurological in origin. It is called Palinopsia and it is a symptom rather than a pathology or disease. It is not known if it is permanent or transient, but for me it is merely troublesome and I am simply relieved that there is nothing to indicate that that the health of my eyes is at risk.
It has been a long day. My husband is waiting outside for me and we retrieve our car to begin the long drive home. I am relieved that everything was stable on my scan. I can leave for our summer vacation with a sense of well being.

Driving into Boston…

Today I drove the 110 miles (each way) between our home and Boston to go to MGH (Massachusetts General Hospital) for a CT scan. Driving myself to these appointments is just one of the ways in which I have become more independent than I was previously. When I expressed interest in participating in the clinical trial, I was warned that it would mean both a considerable time and travel commitment on my part. These seemed small considerations given what was at stake.
The trial drug is administered orally in tablet form and I am able to take my twice daily dose at home. However, I am required to be at the hospital two days a month for blood tests and physicals. This is both for the purpose of collecting data and to monitor my health. I am also given a spiral CT scan of my chest and abdomen every two months for the same reasons.
I have received so many CT scans over the last 4 years. I just can’t dwell on things such as the secondary exposure to radiation that is part of my treatment. More of that between a rock and a hard place. Instead I focus on the fact that I am so very fortunate to have such state-of-the-art care available to me. The spiral CT scan makes early visual detection of any minute changes in the areas that are monitored possible. This provides important information as to the efficacy of the drug to my doctors and the trial researchers.
Before I was enrolled in the trial I would become very anxious a week or so prior to each scan (scanxiety). This was with good reason–as I never had a completely clean scan. These “dirty” scans meant that I could never say that I had no evidence of disease, or, “just call me NED”. This was obviously very difficult on the one hand–no respite from my disease. On the other hand, perhaps I was not as surprised and thereby more prepared emotionally for recurrence. I don’t wish to imply that it was anything but devastating to make that transition to “terminal” and I will certainly devote more time to that in another blog.
But back to the subject at hand–my bimonthly CT scans.
I really don’t get very anxious anymore. This is in part because I feel so good and am therefore more confident of a positive outcome. To be honest, when your scans are two months apart, there is very little time between them in which to get nervous.

On the day of the scan, you are required to fast for two hours prior and to check into radiology one hour before the scan.  Then they hand you two 450 mL barium sulfate “shakes” that you need to drink within the next hour.  I have begun to dread this.  I don’t know if it’s my brain or my stomach, but it just gets harder and harder to swallow (literally).  Today I felt pretty darn nauseous, and I think I will speak to my oncologist about whether or not I could take an anti-nausea medication on the day of the scan.  The last thing I want to have happen is to vomit and have to repeat the whole sequence of events.

At the time of your appointment (well, things don’t always run on schedule) you change into a johnny (why do they call them that?) and take your place in a waiting room that is always several degrees colder than comfort would dictate. Blankets from the warmer are available on request.  Sometimes the patients chat amongst themselves about various diagnoses–other times you wait in chilly silence.  When your name is called you are led to a room where an IV is put in. The nurse in this department refers to those of us who are frequent fliers as the “poker” club.  One side effect of frequent visits can be “tired” or fussy veins. Today a young man is training.  The nurse instructs him to use a pediatric needle for me, as my veins are not only tired but roly.  We are all relieved when he gets the IV into the first vein he tries.  Then it’s back to the waiting room to wait for the actual scan.

The scans themselves are no big deal.  Actually–I take that back.  You are required to hold your breath, and although that is no problem now, when I had extensive cancer in my lungs it was not easy.  For the last part of the exam, they inject a radioactive contrast agent into your IV.  After a few seconds you get a really warm feeling in your mouth and your groin.  And then, after perhaps 10 minutes on the exam table–you’re done.

Waiting for results is never easy.  Sometimes it’s several days or more:  this time I only have to wait two days, as I have an appointment with the trial team on Wednesday.  At that time I will find out whether the cancer is still being held at bay.