Well, I got a good report on my ankle yesterday. The x-rays look great and I was able to walk out of the office wearing two shoes. It is certainly a more rigid version of my former ankle, and yet prone to swelling, but hey, it works.
David accompanied me to Boston, and we were joined by Jemesii. I was to be filmed by a local TV station for a program that will air in January, and they had requested that I bring some family members. Because I have had such a good response to the PF-02341066 trial, there has been a fair amount of interest in my story by the media. We are a pretty private family and definitely not looking for our fifteen minutes of fame, but I’m not one to pass up an opportunity to be an agent for social change. Talking to the media provides me with a platform to increase awareness of lung cancer. In addition, I have expressed my willingness to participate in promotions for the Cancer Center at Massachusetts General Hospital. MGH is a “product” I really believe in and therefore enthusiastically endorse: I am alive today because of their fine team of health care providers.
Between my scheduled appointment and the filming, it was a long day. Peter had gone with a classmate after school, and we picked him up at his friend’s on the way home. David and I had eaten enough at lunch that we skipped dinner, so we grabbed some fast food for Pete. I settled in with the day’s newspapers. The science section of the New York Times featured an article about a man my age who was enrolled in a clinical trial for glioblastomas, the most deadly and difficult to treat form of brain cancer. This gentleman was only the second subject on trial, and the first, although initially responding very positively, had died.
I was the second subject with lung cancer to enroll in the trial at MGH (although there had been a handful of others at different facilities). The first participant at MGH had also had a dramatically positive response, but had gone into the trial at a very advanced state of disease and subsequently died. I felt such a connection to this man in the article: such understanding of what would lead him to try something that clearly hadn’t had the desired result for his predecessor. When you are being chased by a monster and you come to the edge of a cliff, to jump begins to seem like a viable option.
Suddenly I was overcome with fatigue and emotion. So sad, so tired of people getting sick, so fed up with cancer.
It had been a difficult day for the online community I participate in as well. Two people who have been on the board for at least long as I have were having a contentious argument about, of all things, sugar and its contribution (or not) to the spread of cancer. One member, who has always been a great resource for information regarding nutrition, felt as if she was under personal attack and ended up deciding to leave the board. Some members took sides as others counseled tolerance. One very wise post posited that the fuss wasn’t really about sugar, but about all the loss of what is sweet in life that accompanies a diagnosis of lung cancer.
That observation was spot on for how I was feeling yesterday. A profound mourning for my earlier life and the lack of innocence that is part of coping with a terminal illness.
One week from tomorrow, on Thanksgiving, I will turn fifty. I couldn’t be happier about this, as there was a time in the not too distant past when I didn’t think I’d see fifty. But there are days, yesterday among them, when gratitude wears thin. I miss being able to picture myself as an old woman; to take for granted that I too would live another twenty, thirty or even forty years.
But then I am stopped short by the fact that I am now aware of far too many people in their thirties and even twenties who are battling lung cancer. Most of these people never smoked, as, oddly enough, lung cancer in never-smokers generally occurs at a younger age. It is just so…unfair. Unacceptable really.
I am still sad and a little tired today. I won’t deny that there is a part of me that just wants to go lay on a beach in the warm sun; to forget about lung cancer.
But I’m not really one to lay around when there are things to be done. It is no longer just a matter of my personal survival; I want so for all of us to pull through. I want my friends who are in their twenties to celebrate their fiftieth birthday someday, I want us all to continue surviving.
life and breath: outliving lung cancer 
well, my husband is one of the non-smokers in his TWENTIES battling this beast. we intend on squishing it like a bug! we have been doing so for the last five months, so bring on the next fifty years….lol.
Tiffany, it makes me ill that your husband has lung cancer at such a young age, but at the same time, I know that the two of you are capable of putting up quite a fight. Keep on keeping on! Linnea
Hi Linnea,
Thank you for providing such a detailed information on this drug. My mother has just started on this drug as part of a dose escalation trial (although she gets 250mg twice a day which as I understand is pretty standard now). She started a couple of days ago so I guess it’s too early to say. I didn’t manage to get any fluid from her pleurx catheter yesterday so I am hoping it’s because of the drug and not some problem with the catheter or something else … She says it might be easier for her to breathe but at this point I am wondering if it could still be placebo effect. I am afraid to get my hopes up.
I am wondering about this man who died. Do you know why exactly he died — did the drug stop working, was it some complications or some other reasons?
My mother was also a lifelong non-smoker and from a non-smoking, even anti-smoking family…. But then my father’s mother (no blood relation whatsoever to my mother) died of lung cancer as well. When my mother got diagnosed, it was such a shock – not only her non-smoking, but the fact that an event that is rare should happen twice in the same family and with no blood relations. Now, my mother is not young and neither was my father’s mother. I can’t even imagine how terrible it is when it happens with younger people…
Tiffany – it makes me ill as well to hear of someone so young getting lung cancer. I just hope something helps. Best wishes to you.
Diora, I began to breathe better within days; so I am hopeful that is what your mother is experiencing as well. I know it is frightening to get your hopes up–but I don’t think it is a bad thing to do so. As to the gentleman who passed, I only know that he was very, very ill when he began the trial. Obviously, anyone with advanced lung cancer is seriously ill, but each of us is still a unique entity with differing immune systems. We can truly help our bodies fight the cancer and tolerate treatment by exercising, eating well, and also paying attention to our mental health. Best of luck to your family–and I truly believe it is a very positive sign that your mother is already breathing easier–I think probably you can too. Linnea
Thanks, Linnea – now she is saying that it’s still hard for her to breathe, so I don’t really know… She seems to cough less, but is still tired and sleepy. Will wait and see I guess.
Thanks again, and very best wishes.