On Wednesday, I lit a special candle for a 22 year old young man, the son of a friend, whose repeat CT (after 2 chemo-free months) showed a disappointing increase in size of the cancerous tumor he is fighting. The word 'disappointing' is a profound understatement. Here is a portion of an email message (and somewhat revised upon further reflection) I sent to some mutual friends from the perspective of a long, long cancer survivor.
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After much angst, sorrow, hand-wringing, and prayers comes a decision and peace along with the strength of conviction. No matter what course is chosen, 1000% conviction is necessary to step onto the path, be it conventional cancer treatments (currently accepted or experimental), alternative, a combination of the two, or supportive/hospice care. Getting past the shock and deep disappointment of the unwelcome news to then gathering enough reliable information to make an informed decision between all the options is the first set of challenges.
Then comes gathering and weighing opinions from family and friends. Layering in more angst about the logistics related to costs (how much/how little will be covered by your current medical insurance coverage?, how will you pay for treatments if you have no insurance?), employment (how much time off with pay will you get?, will your employer give you time off without pay?, will you be terminated?), deciding what other parts of life need to be delegated or put on hold (for how long?, who knows?), etc, etc, makes a cancer diagnosis the terror and test that is rightly feared by those who have observed it in others and even more so by those who have already lived through it. Having had multiple cancer diagnoses, I can assure you that practice may make some aspects a little less difficult but does not 'make perfect' in this situation ............
And of course, our friend's situation is more complicated by the fact that the 'patient' is both her child and a young adult who has the right to and in fact needs to make his own decisions about his own life. I have not walked her shoes (my parents have with my childhood cancer diagnosis, treatments, and subsequent medical complications) and as such, I can only imagine the many uncertainties and angst (that appropriate word again) associated with this situation.
After living most of my life with fear of what unknown horrible thing was coming next for me related to late-appearing effects of the cancer treatments for my childhood cancer, I finally had the epiphany (during a "2-week cry" after I was done with treatments for my second breast cancer) that I was allowing cancer the opportunity to kill me twice. Of course we all die from some thing at some point and the odds seemed likely that I could die from cancer or a cancer-related complication (#1). OK, deep breath, I could accept that. However, in addition, I finally was able to see that these chronic fears I had been living with (and working very hard to keep under the surface most of the time) were not only allowing cancer the opportunity to limit my life's choices but were also taking my energy and killing my spirit today (#2).
Once I saw all of that clearly, I gasped, I 'woke up', I stopped crying (and feeling sorry for myself), I enjoyed a moment of defiance (no WAY would I allow cancer to kill me twice!), and I felt free for the first time in my life. I think that is called peace or being in a state of grace. It certainly was a classic "defining moment" but also a moment of pure joy for me. It took me decades to get there, but thank goodness I got there!
That moment (which I still remember as clearly as if it were this morning) is when I finally knew that my journey of cancer survivorship was going to be different this time around. The work and energy I had had to use in order to submerge my fears surrounding cancer could now be freed up for something of meaning and joy. (I was still a long way from a book, a web site, speaking, blogs, etc, etc, etc, and would have been incredulous if I was told that is what I would be doing during the next phase of my life!).
At that defining moment in the Fall of 1995 at age 45, I instinctively knew (without even having the words to express my understanding) that I was finally finally finally going to go beyond looking for a cure, to go beyond just coping, to finally begin to focus on improving the quality of my life and healing my spirit from the traumas and losses associated with a lifetime of being a cancer survivor. Reading the entries on this young man's journal at CaringBridge.com makes me feel that he already has more insight into this way of understanding life than I did at his age. I hope he can hold on to that insight, which is an unbreakable connection to all the good, the protection, and abundance that is in the universe, and I send him all my best wishes for health, healing, hope, and also happiness. :-)
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Happiness, simple things, the joy of finding something new in an unexpected place. We are still discovering what gifts our new farm land holds for us. This small handful of wild blackberries is our second crop (the chive blossom vinegar being our first crop). Because of the thorns, I am reluctant to just barge in to pick all the lucious blackberries I can see.Again, a "loss" due to my past cancer surgeries (my surgeons have given me strong caution against risking potential life-threatening infections that can result from injuries to either right and left hands or arms after having large numbers of axillary lymph nodes removed during each of my two mastectomies). So this small crop is all I could pick easily and very very carefully.
Thus, you can bet your bottom dollar that I savored the happiness and sweetness from eating each and every one, seeds and all. Next year we'll look for some thornless varieties of both blackberries and raspberries to plant as a way to hurdle right over those obstacles.
Life and gardening are all about overcoming thorns, obstacles, losses, and hope.
"Life begins the day you plant a garden"
~~ Chinese Proverb
I have used the phrase "Active Hope" for years to describe my approach to cancer survivorship, that embraces an active (versus passive) hope by choosing activities that bring personal meaning and joy in order to optimize both quality and length of a life after cancer.
I hope you plant your garden (either literally or metaphorically) to help cultivate your life. :-)
Diana Dyer, MS, RD
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