Cancer affects those diagnosed with it but it also affects the caregivers of those individuals. In my years practicing oncology I have learned that the caregiver is equally, although sometimes differently, impacted. One thing I love about practicing oncology is that I often get to know patients’ caregivers as well as the patient. I asked one of my patient’s sisters to put into writing how her sister’s diagnosis has impacted her. Her words, written below, are poignant and I think will strike a cord with caregivers, who can relate to the ways in which cancer has impacted her.
Cancer. Cancer wasn’t always a household word in our family. It was something that happened to older people, to parents of parents or grandparents or something you heard in the news. And then it wasn’t. Then it spread like only cancer can. First, it was a fear, well maybe it’s not “CANCER” maybe its something else, well maybe it will be treatable, “lots of people get cancer these days and with new research and drugs, we will be fine.” Then more tests and disturbing results. And then it WAS cancer and bad cancer. Stage 4 pancreatic was the initial diagnosis to my younger sister, age 44, married with 2 kids. And with that came the myriad of decisions and doctors. Of western and eastern medicine and traditional and alternative methods. Of diets and meal planning, and kids schedules and treatments and absorbing so much so quickly…. and then we were all in, our family was cancer. I was cancer.
Now granted, at the time I had a 2 year old, in pre-school, and a baby on the way and was working part-time for myself. I had the luxury of becoming cancer. And I say this because I would not have wanted it any other way. My sister and I are extremely close and I took on the role of organizer and point person because 1) I am good at it, and 2) I wanted to help. I was no different from all the family and friends who hear the news and want to “do something.” I had the time and selfishly it filled me up and made me feel useful. I was “doing something.” But there is a downside. I equate cancer support with being the ED of a small nonprofit. There is always too much to do, too little time and too little money. The mission is great, but at the end of the day, you are exhausted and feel underappreciated. But you don’t even realize that you aren’t taking care of yourself because you pour all of you love and energy into something you’re passionate about. And then you get burnt out and a bit resentful and something has to change.
My way of dealing with my sister’s cancer was to put myself in the middle of it and take it all on. I was the gate keeper for phone calls, for emails for people wanting in. My sister is very social and has many friends but part of her “dealing” process was to go inward. I set up systems and binders and would send out mass emails with updates. It was like grand central station. Part of it was exhilarating because I had a purpose and it kept me from having to really think about the hard/bad stuff. I had no time to sit with the raw emotion. No time to think about what if she didn’t make it, what would happen to her kids, what would I do without a sister. I think we all have coping mechanisms and for me this served several purposes. I got to be close to someone who I could not imagine losing and I was helping.
But being that close and being in the middle of a very emotional situation is not easy. It’s hard to see someone you love starve themselves because they are too scared to find out if their weight loss is cancer or just that they are not eating. It is hard to see someone seriously contemplate going to a mind-reader to “scare their cancer away” vs doing chemo. I think it is a lot like raising children, as they get older you have to let someone make their own choices even when they may not be the path you would take. Many times I’ve had to bite my tongue while hearing her out and many times I have wanted to kick her in the butt for being so stubborn and making a hard process even harder. But in the end this is her journey with cancer and I have to respect her decisions, or at least that is how I see it. Yes, I am impacted but I am not the one that is faced with the fear of dying each waking moment.
Things that have gotten me through it: Optimism. Optimism has been key and I am thankful for that personality trait. I generally look at the bright side of things, do not worry unless there is something to worry about, and even when there is I am always looking for the silver lining. This has served me well in the cancer world. Part of being diagnosed with a terminal disease is that you are always waiting for the other shoe to drop. You know that statistically most people don’t make it. Cancer usually gets them at some point. Or if the cancer doesn’t then the side effects of treatment do.
Knowing my strengths and being able to use them: Everyone deals with cancer differently but I think on some level we all create our own “Cancer Village.” For my sister her network was broad, she was very open about being diagnosed and sharing her experience, but this required more coordination. I think about all the people that used their strengths, their own personal way of being or personal experiences to help my sister through the toughest parts. Mine was organization and “getting shit done.” Not only was I a command center for information, I helped her gather and organize binders of information (labs, medical notes, imaging reports, pathology reports, etc.) so that this could be sent to different doctors when getting opinions. I helped set up meal calendars, organized “chemo cheer” visits for 8 months of chemotherapy. I’m good at this type of stuff so it was a perfect fit. Her sister-in-law stepped in and played hard-ball, read her the riot act about “eating” when my sister was struggling with anorexia prior to her starting chemo. I could not do what my sister-in-law was able to do. I could not be the bad guy. My sister –in-law was also able to talk to my sister in a more spiritual way that I am not comfortable with or versed in and again this is huge. Other friends were able to provide needed humor, to be able to offer help with keeping her kids and school pick-ups and bringing meals. I got comfort in knowing that I was doing something and it was something I was good at that she needed help with.
Taking care of myself: I learned this too late in the game, but taking care of yourself is really important. I think it was about 4 months into her diagnosis and I finally went and had a massage. One should get a massage or have some regular de-stress outlet at least once a week during an intense cancer support period. I remember my massage therapist saw me and my sister’s husband on the same day and commented that we both needed a lot more massage! My entire body was wound so tightly. I didn’t realize it, since I was so intent on getting things done. Just like the airline stewardesses say, you need to put on our oxygen mask first. If you aren’t taking good care of yourself you run your self ragged and then things start falling apart in your own life. One of the hardest parts of supporting someone who has cancer is being able to dip in and dip out. Cancer consumes you, but it is really important to pay attention to your family, friends, and give yourself some time to re-charge. It took me awhile to realize I needed to do this more. I think I was most aware of it when my sister’s cancer came back. After 8 months of chemo and a liver surgery she had 11 good months and then scans showed more tumors. We were just starting to feel a bit more at ease, like maybe she can really beat this. We all put our heads down and prepared for battle again, another liver surgery. She had complications after the surgery and was in the hospital for several weeks and then the anorexic tendencies started again. I remember being so mad at her. Why was she making this so much harder on herself? Why was she self-sabotaging when her life was a stake? Hadn’t we been through this before? I remember feeling like “I can’t do this again!” I have given her so much, but I can’t do it again. In hindsight, I couldn’t do it because when she was first diagnosed, I had forgotten to tend to myself and my family. I needed more massage, more walks, more time with friends NOT talking and thinking about cancer. We did get through it and it was because of the village. Having a cancer village and the resources of more than 1 or a handful of people that you can tap is necessary. My sister’s PA and her therapist were key during this time. Knowing that I could text or email one of them and have a team of “experts” to give me support when she was refusing to eat made a world of difference.
I often tell myself, people die of getting hit by a bus randomly. We never know what our future holds so all we can do is live today fully and look forward to tomorrow. For me there really is no other way of thinking. If you listen to the statistics, the facts, or even really think about the reality of the disease then you miss out on the here and now. My sister’s cancer journey has been miraculous. Treatments have worked, she is getting clean scans, she has weathered surgeries, chemo, a plethora of diets, meditation, yoga, alternative approaches, acupuncture, energy healers, you name it and she has either done it or researched it. But at the end of the day she still has what they now call stage 4 bile duct cancer. That label has not changed, but our world has become so much more than cancer. And for that I am thankful.