Category Archives: Lobectomy

Catching my breath before chemo: May, 2005

The first weeks following my lobectomy were not easy. It was impossible to get comfortable, due to my incisions as well as my bruised rib cage. In addition, I felt so physically diminished; frail really. Once home, my cough returned, sending me back to the hospital for a scan. It was a result of residual fluid in my lungs, and I began to use a nebulizer in an attempt to clear them. I spent a lot of time sleeping in my lazy girl, as the pain medication made me very groggy. I would get up and move around as often as I could, including slow walks around our yard.

My courage would utterly fail me when it was time to change the dressings. This task fell to David, and despite his extreme care, as the bandages came off, so would some of my skin. I had developed a sensitivity to Tyvek, and my skin was now extremely friable. In addition, the incisions where the drainage tubes had been would literally gush each time I coughed: it was horrific.

I should note here that many facilities now perform VATS (video-assisted thoracic surgery) rather than lobectomies on stage I patients, and as it requires three or four small incisions and no spreading of the ribs, recovery is far quicker.

However, the ability of our bodies to heal is remarkable, and slowly I returned to some semblance of my old self. I had lost weight, and in anticipation of the fact that I might lose more during chemotherapy, I did my best to eat. I made more loops around the yard, and David moved the exercise bike into the living room so that I could take some spins on that.

Dr. Lynch had explained that we would give my body just enough time to recover from surgery but not so much that any cancer cells that might be lurking could get a foothold. It was a 6-8 week window–and we would start my chemo at seven weeks.

Just prior to this, I had a port, or porta-catheter, surgically implanted under the skin on my chest. This is a common procedure before starting a course of chemo. Here is a good description of a port that I found online (*We Are Macmillan. Cancer Support–a site from the UK):  “An implantable port is a thin, soft, plastic tube that is put into a vein in your chest or arm that has an opening (port) just under the skin.  This allows medicines to be given into the vein or blood to be taken from the vein.  The tube is long, thin and hollow, and is known as a catheter.  The port is a disc about 2.5-4cm (1-1 1/2 in) in diameter.  The catheter is usually inserted (tunneled) under the skin of your chest.  The tip of the catheter lies in a large vein just above your heart and the other end connects with the port which sits under the skin on your upper chest.  The port will show as a small bump underneath your skin, which can be felt but is not visible on the outside of your body.”

I disagree only with that last part–you could definitely see my port, which I thought was a little freaky (made me feel like an android).  The surgery itself was quick, although I had a minor complication as one of my stitches became infected and necessitated another trip to the hospital to have the stitch removed as well as some topical antibiotics. Ironically, the scar from the port is nowhere near as uniform as the major incisions and in fact I have been told that it resembles a bullet wound. I suppose I could concoct some wild stories if I were so inclined.

In truth, what I had already been through was a bit like combat, and the chemical warfare was about to begin.

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.

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.