I love my life.
I live in beautiful Victoria, British Columbia Canada. I have a beautiful family, a loving husband and two wonderful children (a boy and a girl, ages 12 and 13 respectively). I am also a successful career woman. I have lots to be thankful for and lots to look forward to. I cherish my life even more today, because at the age of 43, I was diagnosed with lung cancer. That devastating diagnosis turned my world upside down, but only for a short time. I decided very early on that I would not let this beat me. I continue to enjoy each blessed day. And most importantly, I am the same person I was before my diagnosis. And thank goodness for that, as it takes a ton of spunk, good humor and stubbornness to fight this nasty disease.
I remember thinking back to March 2007 when a cough started that just wouldn’t clear. It continued to get progressively worse to the point that I was unable to sleep on my left side by July 2007. In August 2007, I finally went to visit a doctor. And during that first visit, I told that doctor that I was very afraid that I had lung cancer. As with most lung cancer patients, getting to an official diagnosis can take a very long frustrating time. In last August 2007 I finally had a CT scan. At that point, I could hardly walk more than a few steps without needing to stop and catch my breath. I was immediately hospitalized and was told that I had significant fluid built up on my left lung. The next day, 3 liters of fluid were drained. While in the hospital I had several exploratory tests done (bronchoscopy, thorascopy and a mediastinoscopy). On September 1, 2007, all alone in my hospital room, I was told I had lung cancer. Even though I had suspected this all along, it was devastating to hear those words.
The hardest thing I have ever had to do in my life was to tell my children I had lung cancer. But I did, because I had to. And in very short order, after getting through that and telling them about how hard I was going to fight, we were playing a rousing family game of Monopoly. About 5 years ago my husband suffered from a life debilitating illness. During that time I was full time mother, wife, caregiver and career woman. I vowed then as I did with my own illness that nothing was going to change in our lives. It didn’t then and it hasn’t now.
My lung cancer was determined to be at Stage 3B and I was referred to the Vancouver Island Cancer Clinic. In the late fall of 2007 to late January 2008, I received 30 radiation treatments and 4 rounds of chemotherapy (cisplatin and etoposide). I did experience some side effects from these treatments including the loss of my hair, but overall, I did not suffer as greatly as many patients do. During that time I fought hard, both mentally and physically. I went to the gym every day, including treatment days. I walked lots and I line danced. I did a fair bit of lung cancer advocacy work (newspaper, radio and TV). And mostly I made darn sure that my family’s lives remained as unchanged as possible.
In early 2008 I was given the opportunity to participate in a clinical trial. It was called the START trial and involved a liposome vaccine. And it was open to patients at Stage 3 who had responded positively to chemotherapy and radiation. The idea of the vaccine is to fight the cancer if it ever came back. I struggled with a few health issues and getting my blood pressure under control in order to be eligible to participate but got the first vaccine shots in April 2008.
In February 2008, I went back to work after being off for 5 months. It felt SO good to go back and resume some of my previous normal activities. I am a senior financial executive and I really love my job. I have never been a stay at home mom and for me going to work gives me quality of life. All of the people I work with are so supportive of me and I very much enjoy my professional and personal interactions at work. Going to work also provides me with much needed humor in my life. Not everyone in my shoes would continue to work, but to this day, I continue to work, as I am able, and am grateful to continue to add value at work.
Shortly after my return to work, I received the results of the effectiveness of my first line treatments. They were incredible, no evidence of disease. And I was absolutely on Cloud 9, I couldn’t quite believe it and was well aware of the significant odds I had just beaten. My elation turned out to be very short lived.
During our annual family ski trip in March 2008 I became increasingly aware of lower back pain. I convinced myself (and others) that it was from being back at work and sitting in my work chair. And, that I had perhaps aggravated it further by skiing. I reported my back pain to the nurse and the doctor and nobody seemed terribly alarmed by it. I had previously arranged for a PET scan in May to confirm my positive results. And the results of that scan were devastating. Although my lungs were still clear, the cancer had spread to my lower back. I felt very defeated and left work again for a short time to figure out the next plan of action.
In late May 2008 I received 2 large blasts of radiation on my spine. The pain got worse before it got better. After those treatments we decided to try 2nd line chemotherapy as well. In June 2008 I started Alimta infusions (supplemented by Zometa infusions to help strengthen the bone). I received 3 Alimta infusions but was quite intolerant to the drug and we decided to end that and try something else. In August I started on another 2nd line chemo drug called Gemzar, and unfortunately after 2 treatments of that, determined that my body was intolerant of that drug as well. I suffered every rare side effect in the book, including hair loss. I have also consulted with a neurosurgeon to see if back surgery would help in my case. At that time I was not seen as a candidate for surgery.
We took several small family vacations during the summer. In late July, I started to suffer from major pain in my right leg. Various tests have determined that I am likely suffering from nerve pain caused by the cancer in my lower left back. Since May 2008, I have struggled greatly with pain. It has also affected my sleep significantly. I am on various pain medications and have consulted with the pain specialists at our clinic. The drugs help, but I have unfortunately learned to live with pain.
I was in pretty bad shape when the Gemzar infusions were stopped. My blood counts were low, I was exhausted and in much pain. A break was in order. It seemed my body had had enough and I really needed some time to regain my strength. So I was not on any cancer drugs for a number of weeks. And I went on 2 trips, one to Las Vegas, and the other back to my hometown, Regina, Saskatchewan.
I started Tarceva (an oral tablet versus an infusion) in early October 2008. My body reacted significantly and quickly to this new drug. The most significant side effect was a very bad rash. I felt like I needed to crawl out of my skin! I have recently got that rash under control and am continuing on Tarceva for the time being.
In late October 2008, I had another PET scan. It revealed further progression in the spine and cancer back in the left lung as well as lymph node involvement. I was not surprised with those results as I could feel the pain in my left lung and knew darn well I was still suffering from lower back pain. The plan for now is to stay on Tarceva and hope and pray it will do it’s magic.
We have another warm sunny family vacation planned soon. With grandparents, aunts and uncles and cousins. I am very much looking forward to that.
I have learned much in my journey with lung cancer to date, and I am thankful to have had the opportunity to learn those lessons. I experience all emotions with much more intensity than before. The bad is devastating, but the good is absolutely beautiful. I have strived to maintain a high quality of life and continue to fight hard.
I love my life.
See my survival story at http://lungevity.org/l_community/viewtopic.php?t=39390
43 years old at diagnosis, wife and mother of 2 wonderful children (1 of each, 12 and 13).
March 2007-cough that wouldn't clear, gets progressively worse, can't sleep on left side by July 2007
August 2007-cloudy x-ray
Aug 27-finally a CT scan, and hospitalized, 3 litres of fluid on lung. Fluid drained, hospital stay, bronchs, mediastinoscopy, thorascopy. Had been told cancer earlier, not in fluid though. Tests done to confirm staging. Staging confirmed as Stage III A, later changed to III B.
Oct 4-PET scan for radiation planning.
Oct 17-Nov 28-30 radiation treatments
Oct 17 to Jan 11-4 rounds of chemo, cisplatin and etoposide
Jan 28-Ct scan/chest x-ray
Feb 12-doc said re CT scan "results are excellent, could possibly be a complete positive response!" Don't think it gets much better than that. I won't say NED yet....
Mar 18/08-NED!!!!! based on updated CT scan. Small pleural effusion left,difficult to tell, but rest is NED. And also cleared for START, liposome vaccine clinical trial.
April 3-1st day of vaccine, every week for 8 weeks, less frequently after that
-May 8-PET scan results, bone mets!!! Lungs still clear. Begin radiation/chemo planning. Off of clinical trial after 5 treatments.
-May 27 and 30, 2 radiation treatments, 14 greys total
-June 10-July 21-first 3 alimta infusion, also receiving zometa infusions separately
-CT scan results July 21-lungs still clear, back a mess, referred to a neurosurgeon for possible surgery
-Aug 13-1st gemzar infusion (stopped alimta, was intolerant and gemzar thought to be more effective)
Aug 16-MRI as reported pain in right leg, results were probable nerve damage from spine mets
-Aug20-end of first cycle of gemzar. Treatments stopped as was intolerant, too many side effects.
Sept 25-bone scan ordered by pain doc
Oct 3-started Tarceva, 150 mg
Oct 23 PET scan results-progression in spine and left lung with lymph node involvement-CRAP!!!!!
Nov 5-Tarceva down to 125 mg
Jan 20-failed bone cement procedure, pain worse
Jan 23-admitted to hospital for 10 days: full kidney failure, later discovered infection in chest which was lanced, identified dropped foot, off of Tarceva since Jan 20
Mar 31-1st of 10 radiation treatments to the spine
May 12-started navalbine
"Strength does not come from physical capacity. It comes from an indomitable will". -Mahatma Gandhi
"When the going gets tough, the tough get waterproof mascara" (assuming you have eyelashes left after chemo!)