Weathering Grief

by Cheryl Jones

Archive for the tag “pancreatic cancer”

Running but not Hiding

10381673_10203106224550085_843545988232127550_oWhen my mother was diagnosed with pancreatic cancer a few months ago, I did what many of us do; searched the internet. First, I looked up the doctor my son-in-law recommended. I knew enough about pancreatic cancer to hold off on getting any more details, at least for awhile.

On Dr. Tempero’s website, I was happy to see videos of her. She was obviously smart and informed and confident in her expertise. But that wasn’t the part I liked best. She had participated in a film by the Pancreatic Cancer Action Network (PCAN), a patient advocacy group. Many cancer docs (and I’ve known dozens) don’t interact with those groups, maybe even feeling a subtle criticism if patients want to advocate for themselves. She was not cut of this cloth. She seemed to want to share information and include patients in their own care. This gave me some comfort heading into the experience of cancer with my mom.

I called PCAN and they  sent me a packet of materials about research, diet, living with pancreatic cancer, even a purple bracelet. My mother found it very comforting to have a sense of direction in the shifting sand of her new life. I signed up for their mailing list, knowing that I’d need to decide which information would help her and which would be overload. So it was my email box that received the invitation to run in Purple Stride, a run/walk to benefit PCAN which takes place all over the country.

“Perfect,” I thought, “A convenient antidote to helplessness.”

I’ve learned over the years that even in helpless situations, there’s always something I can do and it helps to do it. Maybe I can imagine whoever is suffering (even myself) in the arms of a great warm protector. Maybe it’s doing laundry or taking a walk. Maybe it’s listening. And perhaps, it’s a run through the San Francisco Presidio.

I didn’t have much time to train. Keeping my own life going and managing my mom’s health was enough! So I set my goal low. Show up. Run the whole 5 K. Don’t stop. Don’t come in last. (My family will tell you I’m allergic to competition, but I’ve been trying to work on that).

I was out of town for many of the last weeks before the run. I even considered not doing it. But then I’d remember my goals. Could I still meet them? I thought I had a chance. I finally went for an actual training run, my wife riding her bike next to me. I got around Lake Merritt, a perfect 5K, and I did walk part of the way, but I made it. (Let’s not talk about two days later, when I could hardly get up from our very low couch).

Anyway, the day arrived. My youngest daughter and my wife drove me to Crissy Field, the beautiful start to the run. We were super early (this is not unusual) and that meant we got a parking place and got a chance to people watch. This was one diverse crowd! There was no real pattern of ages, genders, backgrounds or ethnicities. That made me think there is no true pattern to who gets this terrible illness.

I estimated the crowd at about 1000. The runners and walkers were enthusiastic, laughter and clapping and chatter dominating the tents and grasses, and the tables set up for those who needed to sit down. There was a band playing covers from when I was young, rock and roll and blues, which helped wake me all the way up. There was a zumba class; I was terrible at it, but that was part of the fun. Finally, there were the speakers; encouraging words to send us on our way. Towards the end, the MC called for every pancreatic cancer survivor to come up front. 5. That’s how many there were. 5. I am not ashamed to say I started crying, and I was thinking, “I’m in a crowd of grievers.”

There were strollers with memorial messages on the back, t-shirts with pictures of loved ones who had died, a bulletin board with the pictures and names of so many. The ache in my heart nearly tore me up.

Then it was time to run, and somehow, the biggest impetus was those 5 people, and all the ones who weren’t there that day and, of course, my own mother.  Somehow I was strong that day. I showed up. I ran the whole 5 K. I didn’t stop. I didn’t come in last. And I did leave feeling I had been able to take at least a small step towards something better. The small amount of money I had been able to raise would be put to good use. Yes, taking action, whatever it is, however big or small, helps me. Usually, my actions are much more private; bringing my mom some groceries or calling to see how she is. Emailing someone I know is going through cancer treatment to see how they are, even writing this blog. But always, small actions help me to feel I’m responding, not reacting. Always, if I remember that the actions are a way of perceiving myself as an actor in this world of things beyond my control, I feel more hopeful whether anything has changed or not.

So as I left the city, headed for a full carb breakfast (I’d earned it, right?) I felt good. Bad things were noticed and talked about and experienced, but I felt good. Strong and capable. A little proud of myself (even though I was raised not to brag). And most of all, I felt inspired. People have some pretty terrible experiences in this world, but together, we can do a lot. And what we can’t do, we can see each other through! That’s something to celebrate.

 

 

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cjones2 pic onlyCheryl Jones has been working with people facing loss in their lives for thirty years. She is the host of Good Grief, a weekly radio show on the VoiceAmerica Health and Wellness Channel, about the transformative potential of our losses. You can learn more about her at her website, http://www.weatheringgrief.com.

 

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Care for the Caregiver

I’ve been caring for myPrimary-Caregiver mother, who was diagnosed in January with pancreatic cancer, one of the most lethal cancers I know of. Even so, it wasn’t until the other day that I was struck by the thought, “I’m a caregiver again, to someone with a terminal diagnosis.”

I was flooded with memories of the decade I spent caring for my first wife, including all the beauty and wonder, the struggle and the learning. I’ve been remembering how I learned the importance of taking care of myself in a way I had never known before.

Learning that lesson while caregiving often seemed counter-intuitive. No, I needed to take care of her! And of the kids! But it didn’t take long to realize that if I let myself get past a certain point, if I let myself drop, I would be unable to do anything for them.

A particularly stunning example was when I lifted the wheelchair even though my back had been feeling tender, and laid myself up for two weeks. How clear did it have to get? I remember going away for a weekend or two, leaving friends to take care of everything, so I could hit the reset button. I came back ready, willing AND able, renewed for the care I wanted to be giving. I found that my capacity for caregiving was much higher when I attended to my own balance.

So now, I bring all that to the endless appointments, procedures, tests, talks about how my mother wants to die, finances, closet sorting and names on the bottom of furniture, (she’s a planner). I’m also remembering once again how to live with the phrase “terminal diagnosis.” I’m remembering how the constant awareness of death, since I no longer resist it, leads to an appreciation of the love I have for my mother, for this time with her. I was already preparing for the loss of my mother (she’s 84 and I have a low denial quotient) but now I am living that preparation each moment.

I have a friend with ovarian cancer who doesn’t like that term, “terminal diagnosis.” She says, “everyone has one and who made these doctors gods anyway?” But for me, it is not that I now know any more about the time of my mother’s (or anyone’s) death, but that I walk with the awareness of death keeping me awake. I go forward with the knowledge that accepting death makes life more meaningful. For that I’m thankful.

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cjones2 pic onlyCheryl Jones has been working with people facing loss in their lives for thirty years. She is the host of Good Grief, a weekly radio show on the VoiceAmerica Health and Wellness Channel, about the transformative potential of our losses. You can learn more about her at her website, http://www.weatheringgrief.com.

 

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