I was doing some holiday shopping with a close friend this past December, and ended up picking up an item I thought would look nice in our home … a sort of stuffed patchwork elephant comprised of imported fabrics. I carried that elephant with me all around the store as I shopped for gifts for others, debating as to whether or not I should purchase it. Ultimately, I put back the elephant before cashing out, thinking, “focus, Joanna; you’re not here to shop for yourself.” And I really didn’t give it a thought beyond that.
Cut to nearly six months later: I’m returning home following an unexpected hospital stay and newly upgraded diagnosis of brain cancer. I walked in the door, and my now three and a half year old daughter ran up to me exclaiming, “look what Daddy got me, Mama … it’s an ELEPHANT!” And there it was … that very same elephant I’d carried around a store months earlier, considering whether or not I should make such a frivolous purchase.
I was a bit confused at first, as the coincidence was more than a little surreal. But then I marveled at the fact my daughter and I had been so drawn to the same exact object. Cool, right? It was a real life manifestation of the elephant in the room.
Well, there’ve been some events lately that have made me take a hard look at another such elephant in the room: my desire to control the perceptions of those around me.
The awareness began as – post diagnosis #2 – I noticed friends and family inviting me to do things I was currently in no position to do, such as meet for coffee or dinner, or to have a play date with our kids. I’d think, I can’t even drive right now, or be left unsupervised … how in the world am I going to meet someone for dinner? And then I’d think, well, how are THEY supposed to know such a thing is currently beyond my capabilities? After all, I haven’t truly shared the details of my limitations with many outside of my immediate circle.
In doing some self-examination about this, I realized the whys of my keeping to myself the details of how this new cancer was affecting me:
I didn’t want to admit these limitations to myself.
I didn’t want anyone to feel sorry for me.
I didn’t want a flurry of offers to help (even though such offers were generally well-intentioned and genuine).
I have a hard time both asking for and accepting help.
I feel protective of my family, my role as mother to my child, and our family’s privacy (more on that later).
Something I realized with my initial diagnosis – clearly a lesson that did not stick well enough the first time – was that my turning away help was actually creating more work for my husband and loved ones. My pride was shortchanging my family. As a courtesy to them, I eventually learned to be more open to accepting offers of help; and sometimes now I even manage to ask for it. But it was humbling. It is humbling. Because asking for help means I’m not as independent as I want to be. It means I’m actually in need of help. And that’s a tough pill to swallow.
With this new updated diagnosis, and its new, more limiting side effects, the pills have been even more difficult to swallow. I recently had to face some hard truths about just how dependent I actually am when I regained consciousness to find the frightened faces of my brother and husband, their having just born witness to me having a seizure at our dining room table. I had been trying so hard to be strong and demonstrate my abilities to care for myself that I put myself at risk of harm. This is where my desire to control perceptions crossed the line into recklessness. And that’s not okay.
I now know – again, through taking an honest hard look at myself and my motives – that part of my desire to downplay my symptoms and diagnosis had to do with what I referenced earlier … my feeling protective of my role as mother to my child and wife to my husband. I wrote early on, while my daughter was literally still a newborn, about how I felt my inner mama bear rise up when others offered to take and care for my child, especially when they didn’t really know me and certainly did not know my child.
Even now, I feel somewhat guilty when a likely well-meaning offer to help makes me feel threatened or protective. And that’s where the desire to control perceptions creeps in: You want to drive my child for me? You want to take my child for a weekend, even though my child doesn’t even know you? I’m the mama here, and I’m not going to acquiesce to anyone any portion of those responsibilities. Certainly not if I can help it.
Stranger still are the offers to “sit” with me when I’m hospitalized or getting treatment. One thing this experience has brought home for me is how much of an introvert I truly am, and how uncomfortable I am being the object of sympathy or pity or even attention. I would much rather be surrounded by close friends and family, or even sitting alone reading or writing in a quiet hospital room, than having to make conversation with someone – particularly someone whom I do not know well – who has offered to sit with me as an act of charity or service.
One of my closest friends and I have always joked about being the ones to hit the ground and shimmy on our bellies across the floor boot camp-style so as not to be seen when an unexpected visitor rings the doorbell, catching us off guard. (That’s no joke … I’ve done it.)
So, sidebar: Please understand if your offers of help are met with a polite “thanks, but no thanks.” My doing so is not a reflection of my feelings toward you or your willingness to help our family. It has more to do with my determination to do as much as possible for myself and my family for as long as I can. And for me not to create a confusing situation for my child where she’s placed in the care of individuals she may never have met or whom she barely knows. I’m the mama, and I’m not ready to give up any part of that role. I’ll never be ready to give up that role, truth be told, although I am not so naïve as to think I’ll never need such help.
And on that topic of needing help, I’ve recently come to accept some harsh realities I don’t know I could have accepted even a few months ago. I now have out-of-town family in my home to assist with certain driving and health care requirements that didn’t exist a couple months ago. I have a handicapped placard in my mom-mobile (and I thought joining the mini-van club was humbling). I’m no longer legally able to drive. I need help caring for my child, particularly when side effects such as dizziness or headache pain become too powerful to ignore. I cannot, at least for the time being, be left alone. I can’t just hop in my car and go somewhere … I am no longer independent. I’ve had to do grocery shopping for my family from the comfort of a motorized scooter.
The truth is, going as far back as adolescence, I’ve spent a good deal of my life trying to control how others perceive me. I now realize that in doing so, I was not only creating undue pressure for myself, I was presenting to the outside world a view of myself that was inauthentic. And given my present day circumstances, I realize I could very well be presenting a face to those in the cancer community – perhaps even to those going through similar diagnoses – to which it might be nearly impossible to measure up. And that my doing so is irresponsible of me.
The bottom line is that, no matter how you slice it: Cancer is hard. Chemotherapy is hard. Radiation is hard. Being a parent is hard. There are few of us, if any, who can successfully juggle these things without missing a beat. And it’s not fair or realistic for me to portray these circumstances as anything less than they are … difficult, physically, mentally, and emotionally.
The lesson for me in all of this is that, regardless of what it is you’re going through, all you can do is to let it be what it is, unapologetically. Because the truth is none of us is in control. And trying to live up to some self-imposed requirement to be superhuman just creates unnecessary pressure for ourselves, sapping away our precious energy and our confidence just when we need it most. And wouldn’t that energy be of better use elsewhere?
And now to the good news (because in my world, I’m always going to look for the silver lining):
The seizure this past week got me into the hospital, where I underwent what turned out to be a daylong study to insure that the newly placed reservoir/shunt was functioning properly, and it was. Radioactive tracers injected into the shunt were followed to show that any chemo infused would go where it needed to go, i.e., in and around the fluid surrounding my brain. And it did, just as intended. Because of this, I can start treatment the first of next week.
More good news? The head CTs taken that Mother’s Day I was first admitted showed more cancer than the scans taken this week. There were also fewer cancer cells in the cerebral spinal fluid sampled this week than in the fluid taken that first day. The radiation worked.
So the net of it all is: My cancer has regressed rather than progressed over the past six weeks. The reservoir shunt procedure was successful. I can start chemotherapy for both cancers – the brain and the abdomen – in a matter of days. My growing medical team is hopeful my cancer will continue to be abated as we proceed with treatment. And, most important of all, I am too.