when i was first diagnosed, i certainly appreciated the sage wisdom and words of inspiration that were bestowed upon me by friends, family and perfect strangers. harder to come by, though, were the words of practical advice. early on, a former colleague suggested i drink as much water as i could the day before chemo, advising that 'it will make a big difference'. i clung to those tangible bits of advice that i could actually incorporate along this journey. for those of you heading down a similar path in the coming months, i have tried to capture a few of my own lessons learned (for what they are worth!) from the perspective of the many hats we wear.
admin: with all of the appointments, phone numbers and bills to process, being organized was definitely key for me. i kept a tidy, little cancer notebook that i brought with me to all of my appointments. i tried my best to capture all of the important points the oncologists made, especially the ones i didn't completely understand at the time. i'd take time at the end of the appointment to repeat back what i thought i heard, in my own words, to ensure i absolutely got the message. for those of you who, like me, try to be considerate of other people's time, be selfish. he or she can afford the extra minutes to recap and ensure you understand the information clearly.
interviewer: before each appointment i would sit down and list all of the questions i had for the oncologists. i found that during the appointment so many topics would be covered, it was easy to lose track of that question that seemed so important to me the night before. i asked
a lot of questions and certainly felt like the oncologists would have rolled their eyes if that were even remotely appropriate.
student: do your homework... and while you may not have the knowledge to do it yourself (i sure didn't!), ask for help. i was fortunate to have a friend doing a post-doc in the cancer world. he helped me to gather journal articles on some points of treatment that were concerning to me. i wanted to see data and understand my odds. i believe that knowledge is power and felt most comfortable obtaining objective information on the decisions we were making regarding my treatment.
optimist: during my very first day of chemo i sat across from an older man who spouted lots of negativity and cynicism. i overheard him talking about everything from how miserable he felt with sores in his throat from chemo, to his belief that cancer was going to kill him. talk about an overwhelming orientation on my first day of treatment. while studies provide conflicting conclusions about the relationship between attitude and outcome, block out the haters and expect to win. after all, it can't hurt, right?
nudist: when i chose a career path years ago, i never imagined i'd spend so much time topless in front of groups of young men in my lifetime! welcome to the world of radiation therapy at a teaching hospital. there's no room for modesty in cancer care. the quicker you get over it, the more comfortable you will be.
navigator: in my journey, being prepared for the worst and at the helm meant completing a health care proxy and living will. walking into the hospital the morning of surgery and handing over those documents was sobering, to say the least. in addition to the real planning, i found it important to find little ways to regain control. for me, it was everything from choosing to cut my hair before cancer took it away from me, to finding humor in something that wanted to be so heavy, to exercising during treatment in an effort to feel like i earned that inevitable feeling of fatigue.
patient: my experiences with doctors throughout this ordeal have been polarizing. this journey started in july of 2009 with a missed diagnosis by a radiologist who overlooked what to others (in retrospect) seemed to be a very clear start of lymphoma. perhaps he was low on sleep, or coffee, or motivation to remember that there is a person on the other side of each scan he reads. while the thought alone of being diagnosed with cancer in 2009 just before getting married both stresses and bums me out, my body would certainly have been able to avoid a lot of the long-term damage it has now sustained. the bookend on the other end of my journey is my amazing primary oncologist. she is compassionate, patient, wise, and brings a refreshing perspective and sense of humor to our appointments. the thought of visiting with her every couple months for the next few years is something i may actually look forward to! one of the challenges on this path is trying to strike a very delicate balance between being your own best advocate and trusting your doctors. in a world with so many misdiagnosed conditions and rushed decisions, it seems important to get second opinions, do your own research and ask questions. yet, there comes a time where you need believe that you selected the best doctor and plan of treatment and trust.... trust that you have made good decisions and, more importantly, trust the doctors who are operating on, caring for and advising you.
citizen: ...of the cancer community, that is. i wasn't comfortable with the whole support group idea; it was hard for me to feel comfortable expressing concerns about my own experiences when i think about the possibility of sitting alongside someone with a terminal diagnosis. (boy, did i have it good!) similarly, it's frustrating to hear survivorship glamorized by someone who had a small tumor or freckle removed and was quickly declared cancer-free without enduring any sort of treatment. for me, individual relationships helped tremendously. i became fast-friends with another hodgkin's patient i met in the radiation waiting room; talking about our similar experiences has been incredibly rewarding. i also reconnected with a school-mate of mine who was six months ahead of me on his hodgkin's journey. he quickly became a good source of information on what to expect, along with one of my greatest cheerleaders when i needed a boost of encouragement. the cancer community is one you'd never hope to join, but one in which you will find amazingly helpful and supportive people should you ever find yourself there. this community has tremendous insight to share and has taught me that being strong and vulnerable aren't mutually exclusive.
