This past weekend was full of cancer events for me. First, on Saturday, I attended a free half-day conference hosted by the Johns Hopkins cancer center, “Surviving Survivorship.” The two sessions I attended were on fear of recurrence, and creative journaling for cancer therapy. Then, on Sunday, my family and friends gathered for the Maryland edition of the Pancreatic Cancer Action Network’s annual fundraising run/walk, PurpleStride. I’ll write more about both creative journaling and PurpleStride. For now, fear of recurrence.
Technically, I shouldn’t yet be suffering from fear of recurrence, because I’m not yet in remission. But I know enough about cancer, and I’ve read enough cancer blogs and cancer memoirs to know that it’s coming. I don’t see any harm in preparing for it now. The session at this survivorship conference I attended was quite useful, led by an oncologist who was initially trained as a psychiatrist. He asked members of the group to first share their visceral, sensory experiences of fear of recurrence (what did it physically feel like, what did it do to your body, what were your specific triggers), and then to share the techniques and tricks that have helped them overcome fear of recurrence. We discussed medication for anxiety (which I do take now, although it was prescribed mostly for post-infusion relief of anticipatory nausea, which often goes hand-in-hand with anxiety), as well as mindfulness techniques like measured breathing. It was a helpful session, and the general mood of the room seemed to be relief that we could talk about this, acknowledge that there’s nothing wrong with it, and leave with practical tools to draw upon the next time it reared its unfortunate head.
The truth is, though, that I long for the day when I can have true fear of recurrence. I dream of a time when I can think to myself, I’m in remission, and smile with relief. I dream of a time when my only cancer treatment can be biannual or even yearly CT scans and oncology check-ups. But I’m not there yet. I’m still actively in treatment, and my cancer is still very much here. At this point in my cancer experience, my anxiety doesn’t come from fear of recurrence, but fear of my next chemo treatment, and even worse, fear that I will never be in remission. Because my cancer is inoperable and my chemotherapy is open-ended, and especially because my doctors have specifically said that we’re treating my cancer as a chronic illness, I am afraid that there will never again be a time in my life when I don’t have cancer. Of course, there is no cure for pancreatic cancer now, but there are people out there - the 8% or even the 1% with stage IV - who survive past 5 years, and even make it a decade or more without active pancreatic cancer. As treatment continues to improve, those people may end up living multiple decades without active pancreatic cancer, and maybe even without recurrence. But the truth right now is that most of those people who make it past 5 years didn’t have inoperable stage IV pancreatic cancer. My case is advanced and difficult to treat. But then again, I also have the unusual advantage of being young. And my treatment is working so far.
Tomorrow I have a CT scan, my first since July and only my third since starting treatment. I really have no idea what it will show. On the one hand, my symptoms seem to be improving slightly over time, and I have been able to continue my treatment, which proved that it was killing my cancer in my last scan and in my history of lab reports. On the other hand, I had to take a long break from treatment since my last scan (for that spleen procedure to raise my platelet levels), and the last time my tumor marker number was tested, it had risen again, slightly (after dropping quickly from a very scary number all the way down to the normal range). This could be a blip, this could mean nothing. Or it could mean that there’s new growth somewhere, or that my tumors have grown or simply stopped shrinking. All of this uncertainty, and the possibility of bad news, is giving me what people in the cancer community call, somewhat affectionately, “scanxiety.”
Scanxiety is often experienced in conjunction with fear of recurrence, because people who are in remission begin to fear the possibility of recurrence most immediately before a scheduled, routine scan. But I’m finding now that people who aren’t yet in remission can also get scanxiety. Instead of being coupled with fear of recurrence, though, it’s coupled with fear of worse cancer - something that, as of yet, has no cute name.
Since realizing that I’ve been slogging through the mire of scanxiety for some time now, I’ve tried various coping strategies: mindful breathing, mindful walking, adult coloring books, collage journaling (at that conference workshop), distraction, quality time with loved ones, and a recent discovery that is bringing untold joy into my life, tiny cooking videos. Unfortunately, none of these techniques is really working for me, or working enough. In combination, the total effect does relieve some of my anxiety. But I think scanxiety might be the kind of thing you just have to live through, until the scan is over and you get the results. Maybe you can soften the edges of it, maybe you can learn to live with it, to welcome it like a seasonal guest, but maybe you just can’t shake it until the source is resolved. So I’m putting one foot in front of the other, one moment at a time, and holding out hope for good news.
Caregivers are essential to living well with chronic illness. No one should have to live with chronic illness alone. Unfortunately, I’m sure that happens all too often. I don’t want to imagine my life with chronic illness without caregivers, especially without my husband.
A good caregiver gives care whenever it’s needed, just knowing what you need and when. A good caregiver gives care without asking for anything in return, without waiting for special recognition, without making you feel guilty, and without waiting for you to shake it off and get back to work carrying your share of any burden. A good caregiver provides affection in the little moments, to remind you that you’re human and you deserve love. A good caregiver sticks up for you to others, describing your lives honestly and representing your illness the way you would yourself. A good caregiver gives care even when it’s really hard, and even when they have their own care needs. A good caregiver knows where to turn for their own care, whether it’s to you in the right moments, or to another loved one. A good caregiver maintains his or her own interests and activities outside of caregiving, and realizes that sometimes he or she will have to sacrifice these and other needs, at least for a little while. A good caregiver makes sure you know you can always turn to them, with honesty and openness, to express whatever you are feeling. A good caregiver lets you be morbid and depressed without making you feel badly about it. A good caregiver lifts your spirits with exactly the right reminder for you of how much love and life there is in the world, even around the edges of chronic illness.
My husband, David, is the ultimate caregiver, because he does all this and more, and because he is also my best friend and my partner. I am so lucky to have him by my side. I truly wish the same good fortune to everyone else who is living with chronic illness.
I’m also very lucky to have many other caregivers: my parents, my local family, my extended family, and my friends. Just as it takes a village to raise a child, in many ways, it takes a village to care for someone with chronic illness. It takes caring calls and messages from family and friends, it takes unannounced visits with ready-made meals, and it takes visits from friends just to talk and be. These people are good caregivers because they allow me to live my truth my way. They listen, they don’t push, and they accept whatever I need in the moment. This kind of treatment from caregivers goes a long way toward reducing guilt, which is a central problem to life with chronic illness. These caregivers make it possible to continue to live a full, good life, with chronic illness at the center.
This morning I woke up with a narcotics hangover: migraine, nausea, and the roaring return of the same exact pain. Maybe I shouldn't have done the celiac plexus block last Thursday, because that was supposed to reduce or eliminate my pain, but I've had continuous pain since immediately after the procedure. Maybe this pain now, my usual dull ache pancreas pain accompanied by sharp pains down the left side of my abdomen, is all from my enlarged spleen. My spleen: holding onto platelets and making me ache, the little sneak. Maybe it's all brought on my stress, and that's all my fault right now. Maybe if I meditated more or stopped freaking out about the future so much, pain wouldn't rear its ugly head so much.
Well, the truth is that today, I have no idea what I'm doing with my life (or what's left of it). I found out yesterday that I didn't get a new job I thought I deserved, but that I might have a very good chance at the next opportunity (for a lateral move with full-time hours, not a promotion or any position that actually uses my master's degree). Then I wonder, from in the middle of all this recent pain, whether I can really do full-time work while I'm still actively in treatment. Chemo takes a lot of time. For me, it's at least 5 hours every Monday afternoon for 2 weeks on, 1 week off. Then it's the infusion recovery, when I feel like shit and can't focus on much (so often don't make it to work), for at least a full day after infusion. Then, of course, I still have to take my chemo pills, morning and evening, every day for those 2 weeks on. Those aren't so awful, but they still drag me down.
And now if I need some kind of interventional radiology procedure (to "shunt" part of my enlarged spleen so it will release more platelets and boost my natural platelet count, or something like that), that will take at least a day, plus possibly another day for recovery, if it's as painful and traumatizing as my liver biopsy was (also done by interventional radiology). Seriously, their jobs must be the worst, because they basically stab sick people who are still awake. All you get is local anesthesia, then they come at you with an ultrasound wand and vicious needles. Only after doing this procedure and testing my blood counts again to be sure it worked, can I go back to chemo to continue my treatment. In the meantime, who knows how much pain I'll have to live with?
So should I even be trying to get a new job in the first place? Should I just sit tight where I am, focus on doing that job well, and leave myself plenty of time for self-care and treatment appointments and recovery time? It's true, cancer is a full-time job. Or at least a part-time one I'm trying to work in around my real part-time job. And all of this is so exhausting and demoralizing that after a while I just want to curl up in a ball and make somebody A) Take my cancer away and B) Make decisions about my life for me. And even after that, I'd probably still wonder whether anytime I'm spending time on (work, household misc., etc.) actually means anything valuable at all when I have a possibly terminal disease, on top of two other chronic illnesses.
This time, instead of curling into said ball, I decided to take a little drive to my favorite part of Baltimore, Hampden. I went to the shop my husband and I always walk through, more for old times' sake than for actual shopping. (This time, though, I did need a nice birthday card for him.) And I happened upon some silly little tchotchkes for sick people (in the get-well-soon greeting card and gift section of the store):
I ended up not buying any of these delightful little things, but now that I'm home and I've looked up their websites, I definitely respect what they do. Maybe I'll go back and get these, despite my initial misgivings. The little crossed fingers pin really hit me at the right moment. I was feeling so down and lost, so unsure of what I'm even doing with my life. At those times, it's helpful to see a reminder of that age-old convention: "things will work out fine." Then I thought to myself, ever practical, where will I even pin this? Will I ever wear it? (For $11?) Then my darker side kicked in and I wondered, do they really, the things? Will things really work out? Honestly, I don't know, and no one does. That's part of life as we know it. But maybe I don't need a constant reminder that I have zero control over my own future, and that blind faith in my idealistic dreams is exactly that: blind faith.
I was definitely happy to see any representation of a pancreas anywhere, but this keychain one is maybe a little too doofy and spiky at the same time. The liver pin is pretty great, though. If I worked in health care, I'd definitely wear these. I might wear them to PANCAN events. I don't think I'd wear them at work, next to my name badge. But that just might be because I'm not ready to invite conversation about my cancer with coworkers or members of the general public (I work in a public library). And I like the chemo IV bag decals, and really appreciate the story behind them, but I'm not sure that the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins would allow me to put stickers on my IV bags during chemo infusion. But, something like this sweet little felt brooch from yourorgangrinder on Etsy, yes, this I could get behind:
Since I was nine, doctors have been telling me that I’m rare, that they’ve never seen another case like mine, that they can’t predict how my illness will progress. But after living with chronic illness for over twenty years, I can’t believe that that’s really true. There has to be someone else out there. If you are that someone else, let me know.
Twenty years of chronic illness have also shown me how little western culture understands illness. We wring our hands, we send sympathy cards, we follow updates. But do we ever actually confront illness? Do we ever open ourselves to the realities of the sick, without judgment or denial, without seeing it all as an aberration? For me, and for every other person* living with chronic illness, it is the norm, it is our reality. When you face pain or symptoms every single day, there’s nothing unusual about being sick. More importantly, there’s nothing to hide about it. I’ve spent many years trying not to show my pain, pushing through it with the big heavy steamroller of denial. But what purpose does that serve? Honestly, I’ve only gotten sicker over the years. So in the last year, I decided to try the opposite, to live my illness openly and to experience all my pain and sickness without pushing back. The jury is still out, but it just might be working.
If being sick is a core part of my self (which it absolutely is), then I cannot allow my sickness to be a negative force in my life. Self-respect and self-worth lead me to honor my sickness as simply my reality, not my burden or my shame. That doesn’t mean it’s all pretty, but that does mean it’s all true, and it’s all worth sharing. So I suppose I’m on a campaign to shed light on my own invisible illnesses, because I’ve had enough darkness.
*According to the CDC (http://www.cdc.gov/chronicdisease/overview/), about half of all American adults have one or more chronic health conditions. That’s about 117 million people in the US alone.