We can see it coming down the track, rumbling slowly, very slowly, lights on, announcing its progress with a distant whistle. We heard the whistle and felt the rumbling last week. The study drug has done exactly what we had hoped it would do for the past fourteen months and officially, my watched clinical trial lesions are still considered stable. However, the past two scans have shown slight changes in the pleura and lower lobe of my right lung. It’s unclear if these lung changes mean progression but there is reason for concern. On a good note, the slowness of this train means that my brilliant care team has the luxury of time to put together best options to discuss for next steps without it being a fire drill. I had a thoracentesis to drain a small amount of fluid a few weeks ago and we are hoping the information gained will help us with decision making. I’m scheduled to get study drug infusion #22 next week and another scan in early December. Dr. Patil gets credit for the slow moving train metaphor. It seems appropriate for this lumbering locomotive. We will know more in the next few weeks.
I was asked recently how I have dealt with the need to change treatments because of progression over the past five years. I had to stop and think carefully about my answer. Currently, I am on my sixth line of treatment and it hasn’t gotten easier. In fact, with each treatment change I experience increasing trepidation and fear. I have to wrap my head around once again, subjecting my body to another assault, all in the hopes of extending my life. What is and has been true for me is that my spiritual foundation gives me the strength to keep going, this and my family and friends. These past five years have highlighted for me that there is only so much I can control. The true test is in letting go. Not letting go as in giving up, letting go as in trusting that there is a plan. It is an evolving process and some days I’m really good at living in this truth, some days – not good at all.
I would be remiss if I didn’t mention that November is Lung Cancer Awareness Month. For the past five years I have shared my story, raised monies for research, participated in awareness campaigns, done interviews, sat on councils and boards and shared with whomever was listening the overwhelming statistics. I don’t say this seeking validation or kudos, I truly hope that adding my voice to the many others who advocate has helped make a difference in advancing research as well as continuing to bring awareness to this stigmatized disease. There is still more to do.
With each passing day I am reminded that becoming grandparents has been a profound blessing. Benjamin is crawling and will soon be walking. He has a determination mixed with old soul knowingness that is a joy to behold. Would I have been this much in awe of this small being without a cancer diagnosis? I won’t ever know. What I do know is that I will never let this sweetness go unnoticed.
I hope that the sweetness in your life is as plentiful as it is in mine.
3 thoughts on “A Slow Moving Train”
That you choose to share your milestones and wisdom with us humbles me beyond words. My love and respect to you my dear broke knee sister xxx
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Peggy- Our slow moving train is also rumbling down the tracks. 2.5 yrs since Mag’s diagnosis. She amazes me. Slowly losing weight despite my best efforts. Multiple lesions under the surface but no organ involvement. Still mentally sharp as a tack which is all a blessing.Young Ben looks wonderful. Our two granddaughters will be 9 in Jan. with newly minted Dad- our son – Zach co parenting with Kate in a second parent adoption after Louis’s death last Oct. The girls are doing great in school and Sasha hasn’t had a seizure in almost a year thanks to the drug Fenteplia. Hard to believe we just passed Scott’s 10 yr. anniversary. So many sweet and sad times. Love to you and Jim and Lene and family. Our best-always! Ken and Mag….
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Dear Peggy, I read your words with joy and sadness. It seems the true flavour of life is bitter-sweet and this is the best flavour of all. You inspire me with your strength and goodness, sending love and blessings and many more long deep breaths much love Julie Zocchi xx
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