Monthly Archives: October 2009

Happy Halloween

L1010246Halloween was almost an after thought this year. The haunted doll house didn’t even make it out of the attic (which might have something to do with the fact that I am yet on crutches) and the two pumpkins that David and Peter carved were purchased just today.L1010238 As we live at the end of a dead-end, on a road that is almost void of children, only one family comes to our door in costume.  Peter did go trick or treating, but he is tagging along with a friend who has younger siblings and they’ve gone to a more suburban neighborhood.
In public school, Halloween has been sanitized to the point of near extinction, but at his small private school yesterday, it was alive and well. All the students in kindergarden through eighth grade marched in a parade for the high schoolers and any parents that wanted to come, and then the afternoon was devoted to merry making. Peter fashioned his own mask this year: a skeleton face with a removable eyeball.L1010233

Cancer as a dynamic process

There was a very interesting article in Tuesday’s New York Times about growing evidence that cancers can spontaneously disappear without treatment (Click here if you’d like to view the entire article). It is a rare occurrence in most cancers, but well documented in testicular cancer. However, the fact that it happens at all suggests some interesting possibilities.
Here is an excerpt from the article: ” ‘The old view is that cancer is a linear process,’  said Dr. Barnett Kramer, associate director for disease prevention at the National Institutes of Health.  ‘A cell acquired a mutation, and little by little it acquired more and more mutations.  Mutations are not supposed to revert spontaneously ‘…it is becoming increasingly clear that cancers require more than mutations to progress.  They need the cooperation of surrounding cells and even, he said, ‘the whole organism, the person,’ whose immune system or hormone levels, for example, can squelch or fuel a tumor.”

Now I find that viewpoint encouraging.  It is hard to accept the notion that once cancer has gotten a foothold in your body, there is nothing more that you, as an individual, can do other than submit to medical procedures and treatments.  I really want to believe that those of us with cancer are active participants in our quest to eradicate our disease.

Although I will never know for certain what environmental carcinogen(s) triggered my lung cancer, I am fairly certain that my own lifestyle made me more vulnerable.  You do hear about individuals who are exemplary in their pursuit of healthy living who still get cancer, but I know I could have done better.  I could have exercised more faithfully and eaten better food, and I certainly could have been more careful about exposing myself to potentially hazardous chemicals, such as second hand smoke, both in my home and the workplace.

I regret some of those choices, but I don’t dwell on them.  Instead, I have made a conscious effort to make those lifestyle changes now.  I am extremely careful about what I inhale, in particular.  I am not embarrassed to pull my shirt up over my nose (while also holding my breath) if I am forced to walk past someone who is smoking.  I no longer use harsh cleaning products and I wear a mask if doing anything dusty.  I keep myself physically active and walk whenever (and wherever) I can.

And I now pay a lot of attention to what is in my food.  We purchase produce that is pesticide free and organic whenever possible.  I don’t drink soda or put sugar in my coffee, and avoid sweets in general (dark chocolate is exempt, but eaten in moderation).  I take a 1000 I.U. vitamin D supplement every day, as well as a 1200 mg fish oil capsule.  I eat much less meat and many more whole grains. Because my liver enzymes are somewhat elevated now due to the trial drug, I forgo most alcohol but still drink a small glass of red wine most nights.  And I am absolutely avoiding any food that has inorganic phosphates in it, as a study has shown that this additive can actually stimulate the growth of lung cancer tumors (for more information, click here).  It means I have to read every label, but I’d rather err on the side of prudence.

By doing what I can to starve the cancer but nourish my immune system, I feel as if I am actively engaged in this battle.  And the truth is, now that I am taking better care of myself, I look and feel healthier as well.  It can’t be a bad thing.

First nine days post lobectomy, April 2005

My recovery began with a dichoctomy.  Emotionally, I was elated that surgery had even been an option. Physically, I was a wreck. It had been more difficult and painful than I had anticipated.  The  1/2 inch diameter tubes in my back drained into a suitcase shaped apparatus which gurgled at the side of my bed. One of the very first hurdles was forcing myself to cough in an effort to help clear my lungs (it hurt so much!).  A nurse came in and quite roughly kneaded the muscles in my abdomen which was helpful (why they hurt, I couldn’t tell you).  I have heard that some hospitals provide you with a teddy bear to hug when you cough which sounds like a good idea.  I also struggled to blow the ball up the tube in the little spirometer–kind of like a circus trick but not as much fun.

The morning after my surgery, while I was yet quite groggy, my oncologist came in to introduce himself.   I was unaware that it was my good fortune to be assigned to Dr. Tom Lynch, who had been testing for mutations in the epidermal growth factor receptor gene for some time. As a young, female, never smoker I fit the profile of someone with an EGFR mutation. However, when all the biopsy work came back, that would not be the case.  What we did know was the following:  I had a bronchioalveolar carcinoma (BAC), mucinous.  My tumor was 5 cm in diameter. Margins were clean.  Also present was centriacinar emphysema. All lymph nodes and bone were free of tumor. I was a stage IB.

My stay in the hospital extended to 9 days, as my lung partially collapsed again. My ipod provided some distraction, but I also spent a good deal of time perusing two books that were a great source of comfort for me.  The author is Pema Chodron, and they are aptly titled Comfortable  With Uncertainty and The Places That Scare You.  In addition, I had the window seat, and there was a great view of the Charles River. I would watch the crew teams in their sculls, and marvel at how far from my world that degree of physical activity now seemed.  For me, a lap around the thoracic wing with my IV cart in tow was a workout.

David was at my bedside daily, although it was more than an hour from our home and Peter’s needs had to be addressed as well.  Pete had just turned nine the week before, and had taken the lack of a real birthday party in stride.  A network of friends had been rather magically spiriting Peter to and from school and invited him for lots of sleepovers as well, but he still needed a parent around.

As difficult as this time was for myself, David, and our older children, it was harder for Peter.  We had a very close bond and he was so frightened and anxious now. One of my strongest memories from my stay in the hospital was the first time David brought him to visit.  Peter crawled onto my bed and kind of wrapped himself around my legs and made these small animal noises.  My heart was breaking, but at the same time, it was going to be my love and dedication to my children that would pull me through.

The day I was released, we made a crucial stop on the way home at a store that sold Lazyboy recliners.  Because of the extreme discomfort from the three incisions on my back, as well as my lack of ability to be on my side due to my fractured rib, we knew that sleeping would be difficult.  A recliner seemed like the best option.  There was going to be a two week wait for a chair, but David played the C card for the first time, and we were able to take a floor model home with us. It was quickly re-christened the Lazygirl, and became my home base for many weeks to come.  I would make a nest of blankets at night, and imagine myself in a small boat that was taking me back to a safe place.

Humble Pie

Yesterday there was an article in the Boston Globe about a young man (high school) who suffered a major spinal cord injury while playing football. He is in rehab learning how to use his upper body again and hoping against hope that he will regain use of his legs as well. His attitude and courage amazed me, and made me feel a bit sheepish about ANY whining I have done about my current convalescence. Piece of cake compared to what this kid is facing and he’s got his whole life ahead of him. That’s the thing: when you start taking yourself too seriously, it is never hard to find another’s situation to put it all in perspective.

On that note, I have returned to household chores such as doing the laundry and cleaning up a bit: last night I cooked dinner and this morning I drove Pete to school. Feels so great to get back into the everyday routines. I also went for a short spin on the exercise bike yesterday. It was kind of trippy, as my ankle has a long way to go before it is flexible, but I’m glad I did it.

The disruption of my regular routines has messed up my sleeping patterns as well. Sleep is one of those things that I am generally very good at; getting somewhat prone and being warm are usually my only two requirements. I am waking up a lot in the middle of the night now and unable to go back to sleep. There are positives to this though. It is a very creative time, as long as I can remember all those great ideas in the morning. And last night I saw a shooting star–a rare treat.

Jemesii helped me tweak my blog a little. I have added the Pfizer video to the mast head, just right of ABOUT, and also provided a link to the ABC interview. Unlike a book, a blog reads sort of backwards, and you have to work a bit to access the early chapters. I wanted the videos to be easy to retrieve as I believe they are both very effective illustrations of the efficacy of the trial. The loose format of a blog is very conducive to the way I work, but ultimately I would like to organize certain “chapters”. For instance, once I have finished recounting the events directly before and after my diagnosis in 2005, I will make it easy for someone to read those in consecutive order. And so on and so on!

In the meantime, I need to mention that several weeks ago I quietly observed a very important anniversary. As of October 1st, it has been one year since I took the lead in dose of PF-02341066. One year of effectiveness and counting. As remarkable as my initial response was, I believe this is even more amazing. In a field in which the extension of a cancer patient’s life by weeks or months is considered beneficial, a year is HUGE. Earlier this year I sent a thank you note to the CEO of Pfizer (to which he graciously responded) and I have just mailed another to him–in recognition of this milestone. I sincerely hope stories such as mine soon will become commonplace, and that cancer really could be a chronic condition rather than a death sentence. Next, perhaps a cure.

And now for a little visual distraction.  These photos are of some antique microscope slides.  I have always loved microscopes, and I found these old slides vastly superior in presentation to the sloppily prepared slides of my youth.  I am attracted to the shapes (got a thing for circles), colors, and all the graphical elements.  And then there is the subject matter.L1010224L1010226.. They are almost like little poems:  Foot of Spider 4, Tongue: Sphinx Moth 3.

Eleven screws and a plate

Yesterday I had my two week post-op appointment for my ankle. All seems to be healing well and I had the stitches removed.  I will be in the boot for another four weeks at least;  three more weeks minimum for crutches, but I can start being more active in general and I can begin working on the exercise bike.  Yea!  We also got to see the x-ray of the hardware. Eleven screws and a plate–a lot of metal! I wish I had asked for a copy of the x-ray because it’s really kind of cool. When I do receive a copy, I will add it to this post.
It was also necessary to make a quick trip to infusion for my calendar and I ended up feeling really nauseous. I had this happen several weeks ago as well and I have to believe it is a late side effect of the trial drug. At any rate, Marguerite and Sarah came to my aid with some compazine and David procurred some nifty looking barf bags just in case. Might have bee the company, but soon I was feeling better. David grabbed us a quickie lunch at Whole Foods and we headed over to Chelsea for my CT scan of my chest and abdomen–those two months in between scans really fly by.
Today David took me on an impromptu field trip. We drove up to the foot of Mt. Washington (home of the world’s worst weather–really). It was not possible to go further unless we hiked in, as the road is already closed for the season. We enjoyed the visitor’s center and I felt very encouraged by a conversation I had with an older gentleman and his companions in the parking lot. They were outfitted for a hike, and commented on my air cast. He had suffered the same injury while biking five years ago. It did my heart good to see him hiking in the White Mountains!

We picked up some lunch in a little organic deli/store above Conway where I was told by a man that I looked just like Amelia Earhart.  I returned home well satisfied, even if I wasn’t able to join the hikers this time. Now that my general mobility has increased and it is no longer necessary to keep my leg elevated, I am looking forward to returning to other activities, such as drawing and painting.  In fact, I’m going to make a pot of tea and go start now.

Another wonderful moment…

At David’s urging, I went for another ride today.  Although it is already quite chilly here, the sun was shining, and he wanted me to take advantage of it.  I bundled up and once again caught a lift in the trailer behind the tractor.  We stopped at the edge of the clearing just above the woods.  There are a number of granite ledges here, and he spread a sleeping bag on one.  I made my way to the ledge, somewhat more skillfully than the last time we came down.  And then I reclined, leg up, sun on my face.  What a feeling.L1010240

The good and the bad

I awakened about three in the morning several nights ago to an incredibly crisp, clear and star strewn sky. A large oak tree is visible from the bedroom windows, and it appeared to be strung with stars. It was absolutely magical as well as transient, as our planet continued on its orbit and the stars quickly shifted position. It was a sweet few minutes.
That was the good part. And now for the bad (not horrible, just garden variety bad): I am really struggling with my broken ankle.  It’s not that its not healing properly: as far as I can tell, it is slowly on the mend. I even recognized my leg this morning, as the discoloration and swelling has largely abated.

I am however, impatient. I believe I’ve already stated that patience is not my strong suit. Having a diagnosis of advanced cancer has done nothing to temper that. Although I am better at savoring small wonders than I may have once been, I am also terribly cognizant of the value of each moment. Time is no longer something I can take for granted. Now that I am past my “expiration” date, I can’t help but we aware of the tentativeness of my existence.
When our lives are in balance, we don’t have to focus too much on any one thing. It is difficult to maintain balance when you have a terminal illness. Just as someone who is famished hungers for food, those of us who are so cognizant of our mortality hunger for life.
Ok. Sitting here in my recliner (the lazy girl) is life, but I mean LIFE. Capital L, Living.  I actually thought I was going to be able to ski this year. Last night I started googling information about broken ankles, because I didn’t ask a lot of questions when I was in the hospital. You’d think I’d be pretty good at this by now, but the truth is, I was just focused on getting through the moment.
There is an internet site devoted to broken ankles called All things broken ankle; including pertinent information relating to recovery time. Now I didn’t just break my ankle a little, I broke it a lot. So it looks like 8 weeks plus in the aircast, many months of physical therapy, and then after a year or two, with hard work, back to almost normal.  Sheez. My first reaction was, “I don’t have time for this”.   I’ve got to get out there, make every day count, not miss a thing…
I think if I had understood the severity of my injury in terms of recovery time, I might have cried on that mountain.
But, too late. It happened, the nastiest, most painful part is behind me, and I’ve just got to deal, right?  I’m going to pretend the physical therapist is really a personal trainer, and I’ll get in the best shape ever. And in the meantime, even as I watch my leg(s) atrophy, I’m getting some awesome biceps from these crutches.

April 2005: a lower left lobectomy

Just a note on chronology:  I am slowly, very slowly, recounting the first few months in which I was aware that I had lung cancer.  Should you desire to read this part of my journey in order, it would go like this thus far:

Clues before a missed diagnosis

Hearing the words “you have cancer”

What next: the week post diagnosis

April 2005:  a lower left lobectomy

I dressed up for our consultation with Dr. Douglas Mathisen at MGH on a sunny Thursday morning.  I wanted to go into his office projecting youth and vitality; as if I were auditioning for this surgery.  David and I were unbelievably anxious.  We had already heard that the bone scan and brain MRI showed no sign of metastases, positive indications that my lung cancer was still at an early stage. We hadn’t yet heard the results of the PET scan though, and that was one more hurdle to cross.

Finally my name was called and Doug Mathisen greeted us both with a hand shake, a good firm hand shake. Everything about Doug’s demeanor was comforting in a “I’ve got this under control” sort of way, and David and I both felt reassured.  We learned immediately that the PET scan had lit up like a christmas tree in the area of my tumor, but nowhere else.  While looking at an x-ray image of my lungs, Doug explained that although my tumor was quite large, he felt it could be surgically removed:  with one caveat. Prior to the lobectomy, but after I had already undergone general anesthesia, a number of lymph nodes would be removed from my thoracic region and immediately biopsied. If any were malignant, the surgery would be called off. Should they be benign, the lobectomy would proceed.

Surgery was scheduled for the following Thursday.  I was as close to elated as a person could be in these circumstances.  What I wanted was a chance, a fighting chance , and I had just been offered that.

The week passed slowly.  On Thursday morning we arrived at the hospital early.  I had thought to pin a note to my surgical johnnie that quoted from Shakespeare’s Macbeth, “Out, damned spot, out”, but I was afraid it might not follow surgical decorum.  I know I was shaking as they wheeled me down to surgery. Charmingly, introductions were made to the anesthesiologist and various personnel, although I would be unconcious within moments and remain so for the length of these brief relationships.

I awakened many hours later in the thoracic ICU.  Tubes snaked in and out of my body and inflatable boots rhythmically compressed my feet.  When able to speak, my first question was whether or not it had been the extended surgery. The answer was yes:  22 lymph nodes had been benign. Dr. Mathisen had removed the entire lower lobe of my left lung. Entry was from the back, and I had a large crescent shaped incision in the area of my left shoulder blade, as well as two smaller incisions fitted with drainage tubes.  To facilitate removal, my ribs had been spread and one of them had a section taken out for biopsy.

We now knew that the tumor was 5 cm at its greatest diameter.  It was very close to my heart, but the margins were clean.  I felt awful, but joyfully so.

Quick trip out back

On Sunday, David and Peter went to the fair in Sandwich along with Jemesii and her husband Jamie. David had valiantly tried to find a wheelchair to rent so that I could come too, but where we live it is difficult to secure such a thing and certainly not for only one day. So I bid them adieu with one request: I asked David to take some pictures of Pete on the carnival rides. Peter LOVES any sort of whirlygig or roller coaster; the crazier the ride the better.  My heart is always in my mouth as I watch him, but his blissed out expression is a joy to behold. Perhaps all the more so, because Peter is generally very sedate and measured as he goes about his life, and there is something quite unexpected in his relish of these gravity defying rides.L1010163

Yesterday David addressed my hunger to be out and about.  He hitched the trailer behind our tractor and made a nest of sorts out of sleeping bags.  This was my chariot, and after tucking me in, he slowly made his way down to the edge of the woods.   Once there, I was able to hobble around a bit on my crutches and see all those leaves close up.  And I was outside!  Yes!  My little adventure concluded with a ride through a section of the woods and then a glass of wine in front of the fire with my leg propped up.  A good, good, day.

Sadly, we also bade goodbye to Jemesii.  She has been here ever since the day I broke my ankle, and now her leaving felt a bit like when she first left home to go to college. She has been such a star the past two and a half weeks: nursing me, cleaning, baking, doing laundry, ferrying and looking after her younger brother. Buddy (our golden retriever) has an even bigger crush on her now than he did before.

Jem even set about organizing 25 years worth of family photos.  This is a task that time has only made more daunting, and therefore, less likely that I would get to it. Peter has helped her, and it has been fun to have these visual reminders of days past on display.

Anyway, I am so thankful that she was able to be here and I continue to be awed by her burgeoning capability and maturity:  this person whom I have loved and watch grow for almost a quarter of a century now.  Thank you for sharing her Jamie!

Grace and gratitude

It’s now been two weeks since my unfortunate misstep. I confess to alternating between feelings of frustration, boredom and dismay during my convalescence. Dismay that a slip of the foot could have caused so much collateral damage (consider even just the monetary cost of an ambulance, a trip to the emergency room, plus surgery and six days in the hospital). Frustration that I can’t move around, particularly now, one of my favorite times of year.

And then there is the fact that I am so undeniably dependent on others for almost everything now.  This might be the hardest thing of all.

From the moment I realized that my ankle was broken, I was truly at the mercy of my companions. Luckily for me, I had companions, and luckier yet, they were merciful. As I lay there on the mountain, I knew I had some trying times ahead.

The first challenge was to stay on top of the pain. I learned a lot about pain control during two and a half natural childbirths (my final child was 10 pounds, 4 ounces at birth, and I held out without drugs until the last possible minute).  I also had that mantra to repeat, Om Nama Shivaya.  Repetition of these syllables has gotten me through more tough spots than any other single thing.   Initially I was a little self conscious, reciting these words from Sanskrit, but after a time, they became mine.  I was always unsure of their meaning, but had a vague idea that they translated to “all is God”.  This struck me as ironic, because if a label is required to describe one’s spiritual state, I would choose atheist.

Today I googled Om Nama Shivaya, and came up with a variety of definitions. If you click here, you can read one of my favorites.  Whatever the true meaning is, these words have woven their way into the pattern of my life over the past thirty years and have never failed to offer me comfort.

Two weeks into this “mis”adventure, pain is no longer a major consideration. As far as my ankle goes, it troubles me firstly for its current uselessness, and secondly, for its aesthetically unappealing appearance.  It is way ugly. Between hue and form, I would have to say it looks cadaverous.  Not the sort of thing you want to see attached to your own (living) body.  As long as it returns to function…

So that leaves boredom (which is really just a matter of choosing occupations that I can do with limited mobility) and my frustration over my inability to do things for myself.  This is the most humbling part about being temporarily infirm for me, and therefore the area in which I have the most potential to grow. Those times in my life when I have required the most help from others, are undoubtedly when I am most aware of the concept of gratitude.

I really do believe that most people are good, and likely to do the right thing. When I have been poor, or afraid, or hurting, there has always been someone there to aid me.  In some instances, many people.  Of all kindnesses, it is often the kindness of strangers that is most gratifying.  I think this is because it is almost the penultimate good. Most of us are there for our friends and family, but when you reach out to those who have no claim on you other than their current need, you are really doing something for the right reason.  In fact, that is often the answer someone who has performed a heroic deed gives in response to the question:  “Why did you do it?”  “Because it was the right thing to do.”  There it is.

And so once again, amidst my frustration, I am in a state of grace, if indeed that is what being grateful is.  In the past two weeks I have been the beneficiary of so much kindness, caring, skill and time on the part of friends, family and people who prior to this were strangers.  It is a bit overwhelming and there is an aspect of humility to it that is not always easy for me:  a reminder that no matter how independent I would like to be, I am part of a society.  To give is empowering.  To get is, well, a reminder of your interdependence.  And that is not necessarily a bad thing.