I have two younger brothers, both of whom are in good health. I feel only positive about this, and the fact that they are both healthy makes me very happy. I think sometimes about what would happen if either of them were injured or got sick, or if they developed any form of any of my chronic illnesses. Honestly, it would break my heart. I think their good health is a source of stability for me, something steady I can count on. But that’s probably unfair, because I wouldn’t want them to feel guilty for me if their good health ever changes. And there is so much guilt and pressure wrapped up in good health and ill health and the state of our physical bodies - not just for families of someone with chronic illness, but especially so.
My middle brother, who is about seven years younger than I am, called me recently to discuss a fundraising race he wants to run in the spring. He lives out west, where he’s able to do the outdoor adventuring that he loves. I consider him an athlete, although he doesn’t actively play one sport on a regular basis. He told me that he’s getting back into running, and he wants to take the opportunity of running this race in Idaho in the spring to raise money for a nonprofit connected to my health. He asked my opinion on which organization to fundraise for, and between the National Pancreas Foundation and the Pancreatic Cancer Action Network, we decided that PANCAN has easier options already set up to match what he’s trying to do. I thanked him for considering me in these plans, and for dedicating so much of himself to supporting organizations that are working hard to support me and others in my position.
He told me that he’s been thinking a lot lately about our genetics and what it means that he got lucky while I didn’t. He said he wants - maybe out of a feeling of responsibility or calling - to be able to put his good health to use, for causes related to everyone’s health. This is admirable. I can imagine that being so closely connected to illness while being personally healthy and fit might make one think a lot about luck and good fortune and whatever else you want to call whatever it is that determines these things. It’s true that both of my brothers could potentially carry the same genetic mutation I do, even though neither of them has manifested any evidence of the disease associated with that mutation. The fact that neither of them has, past the age of puberty, means it’s more likely that they don’t have this same mutation. But there’s no way to know unless they get tested, which isn’t clinically necessary. Similarly, there’s no way to know whether this mutation started with me, de novo, unless both of my parents get tested for it, which is also not clinically necessary (or covered by insurance). So we all live with some mystery, and make assumptions and decisions based on the clinical evidence presented. That’s really all anyone can do.
I don’t know what it’s like to have a sibling with chronic illness, especially in childhood. Over the past year, as I revisit my childhood experience of illness and reconcile that with new developments in my current health, I’ve thought about what it must have been like for my brothers when we were all kids and I was sick. When my hereditary pancreatitis first manifested, with acute pancreatitis when I was nine, my middle brother was about a year and a half old and my youngest brother wasn’t born yet. So, essentially, they both have known me to be sick their whole lives. I know this impacted them, at the very least on a logistical level, as I had so many doctor appointments and medications and spent time sick at home. Throughout it all, my parents had to divert attention to me, which I'm sure sure affected my brothers. Especially for my middle brother, my early illness directed the course of his young life to some extent. While I was in and out of the hospital for months at the beginning, he went to stay with our aunt and uncle in the next state, so my parents could be with me in the hospital. He may not have noticed or minded this much, being so young, but I’ve studied early child development enough to know that everything impacts a person’s development between the ages of zero and five. We are all fortunate that we had loving and generous family close by to help out, and there are many ways in which my parents and I got through those early experiences of my illness because of the kindness and goodwill of our “village.” I don’t know, though, what this experience meant for my brother, and he might not really know either.
And now both of my brothers have to live with the fact that their sister has cancer, and at a young age for all of us. I don’t know what this is like, either. But I know that they have both been there for me in very significant ways since my diagnosis, and this means a lot to me.
My grandfather commented on my last post that he doesn’t like to say that he’s “blessed” with good health because “that implies that those who don’t enjoy good health are ‘cursed’ with bad health.” I agree completely with this sentiment, and I don’t feel that I have been either cursed with bad health such as pancreatic cancer or blessed with the good fortune of avoiding death so far and finding success in my treatment. I believe that these things just are and we can’t control what happens organically to or in our bodies. No one is to blame for these things. There is no point in looking backwards, trying to trace lines of cause and effect for “fortune” or to find “reasons” why “bad” things happen to “good” people. Life just is.
I’d like to close with two quotes from my favorite Buddhist teachers, Pema Chödrön and Thich Nhat Hanh. I know Buddhism isn’t for everyone, but I find a lot of comfort in it:
“Letting there be room for not knowing is the most important thing of all. When there’s a big disappointment, we don’t know if that’s the end of the story. It may just be the beginning of a great adventure. Life is like that. We don’t know anything. We call something bad; we call it good. But really we just don’t know.”
“If you can accept your body, then you have a chance to see your body as your home. You can rest in your body, settle in, relax, and feel joy and ease. If you don’t accept your body and your mind, you can’t be at home with yourself. You have to accept yourself as you are. This is a very important practice. As you practice building a home in yourself, you become more and more beautiful.”
This week, the US presidential election has taken a turn that just doesn’t sit right with me. Disclaimer: I have strong opinions about this election, but I will do my best to keep this post focused on the topic of this blog. Please, share your opinions with me in the comments section.
Trump’s campaign has been raising questions about Clinton’s health for a while, and now that she is being treated for pneumonia, many Clinton opponents are seizing on this idea that she is unhealthy as an argument against her candidacy for the presidency. Meanwhile, there is much controversy surrounding both candidates’ medical records. Clinton has already released extensive medical records, and both candidates have released statements from their personal doctors attesting to their overall health. Trump was supposed to release his medical records on the Dr. Oz show this week, but has apparently backed away from that at the last minute. As Clinton takes a few days off the campaign trail to recover from pneumonia, the media continues to obsess over both candidates’ health and medical records, and recent polls indicate that many Americans have opinions about each candidate’s physical fitness.
All of this begs the question, what is the connection between health and strength? In our culture, does the presence of any sickness whatsoever disqualify someone from public office, or at least from our highest elected position? Can you be president and be “unhealthy” or live with illness?
I understand the basic premise that sickness that makes it difficult or impossible for someone to work would be an obstacle for the presidency, because the president needs to be able to work virtually 24/7/365. But I take issue with the concept that illness negates strength, or somehow makes someone weak or unqualified for an important job. I worry that negative views of Clinton’s pneumonia extend into public opinion of all public figures when they are temporarily sick, or even all people who live with chronic illness.
The irony here is that so many people in our culture also immediately use words like “strong” or “brave” to describe people who live with significant chronic illnesses. How many times have you heard someone with cancer or another life-threatening illness called a “fighter” or held up as a model of strength and courage for others? People tell me all the time that I am strong, and while I do agree with them, I don’t think it’s for the same reasons. They probably think I am strong because I don’t view my illness as a reason to give up on my life, because I keep going through it all. In fact, many of these people probably think I am strong simply because I continue to wake up every morning and live my life. They say things to me like, “I couldn’t possibly handle it the way you do,” or “I don’t know how you do it, you’re so strong.” Honestly, living with chronic illness is just the same as living without it, you just live your life every day. How do I do it? I take it one moment at a time and put one foot in front of the other. Does this make me strong by default? I don’t think so, I think strength means something more substantive than that. I think I am strong because I work a demanding job, do a lot of household management, have strong opinions about many issues, and don’t let people take advantage of me. I think I am strong because I have a master’s degree and a bachelor’s from a top-ranked women’s college (Smithie for life!). I think I am strong because I take a stand on social and political issues, and advocate for chronic illness and cancer research and patient support. I would like to be respected for my strength because of these accomplishments and actions, rather than from the mere fact of having chronic illnesses. I don’t want strength that comes from automatically ticking a box. I want the strength that I earn.
So when we call people strong simply for having a chronic illness, and also call a presidential candidate weak for having a temporary, treatable condition, how can we possibly make sense of sickness and strength? This is so jumbled and contradictory, these mixed societal messages. I don’t think I’m the only “sick” person out there who finds all of this disingenuous and hypocritical, who distrusts the societal message of “strong fighters” with chronic illness because at root, our culture really harbors such negative views of illness.
Does any form of sickness mean someone cannot be smart, capable, or a good leader? If working so hard that you contract pneumonia at age 68 means that you’re not qualified to lead the country, then what does that mean for the millions of Americans who have chronic illnesses purely by chance, not through any lifestyle choices or personal decisions? (At the same time, who cares how someone gets a chronic illness? The only attention paid to causes should be to find early detection methods and cures.) Are those of us who live with significant illnesses relegated to one of two lonely camps: either you brought it upon yourself and should be ashamed; or the best you can hope for is to be a saintly icon of superficial strength, excluded from work or any activities other than sitting around being inspirational? I, for one, refuse to accept any of this.
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.
Sometimes, when you have a chronic illness and you’re doing a pretty good job of living around it, living your life fully and well, it comes roaring back to remind you just how sick you are. In these times, simple things will become impossible, everything will hurt, and it will absolutely be too much to keep your eyes open. In these times, you will be unable to forget or ignore your illness.
I started back on chemo last week with infusion on Monday. Infusion went pretty well, and I wasn’t feeling too sickly when I left. Within a few hours, though, the nausea was hitting hard. For the first half of that night, I woke almost every half hour, sitting up in a panic as waves of nausea crashed over me. I’d lean forward over my bent legs, heaving and trying to catch my breath, until I could finally lie down again and immediately fall back asleep. Then, for the second half of the night, the nausea was like a constant wave and I couldn’t get back to sleep. It was like a demon inside me was trying to rip its way out through my esophagus, but another demon was holding it back, keeping it angry. I don’t know, that metaphor doesn’t make any sense. But I’m still very much in recovery right now, six days later.
I emailed my doctors Tuesday morning to see if they could suggest anything I could do. They advised me to go to the chemo urgent care center at Hopkins. This made sense, but I had to figure out how to get myself there. I called my parents to tell them I would drive myself downtown, but they urged me to call an Uber instead. (I’ve been wary of Uber so I’ve never tried it before, but I managed to create an account and call a ride through my stupor.) My grandparents drove up from Annapolis to meet me at the hospital, and they arrived right when I was called back into the chemo suite, after waiting in agony for a while.
In urgent care, they accessed my port and hooked me up to IV fluids, then gave me successive doses of Zofran, Ativan, and Phenergan, all of which did alleviate my nausea slightly. I’m not sure how many hours I spent there, because I was just sleeping in a haze of chills and medicine and the worst nausea of my life (and that’s saying something). My poor husband came straight to the hospital from his first day of the new school year (he’s a middle school teacher), brought me home and took care of me. The next day, I went back to urgent care for more of the same, and by the end of that day, I was finally feeling somewhat better. Or maybe not. I’m still so confused right now that I’m not a reliable narrator.
Since then, I’ve literally been sleeping and trying to eat, that’s it. And this takes all of my energy, in fact, more energy than I have. I’m at a constant deficit. But it’s so hard to eat, so so hard that I’ve lost probably six or seven pounds in just as many days. I can keep things down, because I seem to have lost the ability to vomit, sometime when I was a child, sick in the hospital. I used to dry heave so much then that we’d lose count of how many times in a day my stomach contracted on itself. Somewhere among all that, I think the valves closed off or something, and I’ve never been able to throw up since then. But now, it just causes me so much discomfort to eat, that I really have to force myself.
And I need to force myself, because I’m dangerously weak. I took a shower yesterday morning and almost passed out. The effort was so taxing, my body was so depleted, it was stunning. I know this is all very dramatic, but this has been one of the worst experiences my illness has caused in the last year. All I want to do is cry about it, but I don’t even have the energy for that. This all makes me feel pathetic. This makes me think I’m crazy for even trying to work, part-time or full-time. This makes me think, what if it’s like this after every chemo infusion? That’s impossible, I simply won’t do it. There has to be an alternative. I can’t live through this again.
In mid-January 2016, I went in to the Johns Hopkins Hospital for an outpatient Interventional Radiology procedure, a liver biopsy. There were several spots scattered throughout my liver, showing up on scans and growing despite the antibiotics that would have cured them if they were just abscesses. My mother-in-law happened to be visiting when my biopsy was scheduled, so she and my husband, David, and I trudged through the confusing pre-procedure testing at the Outpatient Center, an odd building built like an airport terminal. When we finally got into the Interventional Radiology procedure area, David and I sat together and listened to the consenting doctor’s description of what they were about to do, without it quite sinking in.
Probably because I was slightly in shock at needing a biopsy, I hadn’t given much thought to what it would mean to biopsy the liver. If you just think about it, though, you realize how harrowing it is. They need to remove samples of tissue from within the organ, which is large but is nestled up under the right ribcage. This means that they essentially need to stab you with hollow needles, repeatedly in your right side, until they get enough tissue samples for a full biopsy. They use ultrasound to locate the right spots to stab, and I think they did some kind of cursory testing on the samples they removed elsewhere in the room, to make sure they were getting enough of the right tissue. If I remember correctly, they targeted two of the spots in my liver, one toward the front just under my lowest rib, and the other on my right side, a bit farther down my abdomen.
They gave me mild sedation to calm me down, but they certainly didn’t put me under. I think I even had to ask for local anesthetic, something the woman who scheduled my biopsy over the phone had recommended. I can’t imagine why they would ever do this without local anesthetic at the very least. At first it all seemed okay, as they positioned me halfway onto my left side, with my arms overhead, holding the stretcher railing or something. But I quickly realized it was not okay, and my terror and discomfort broke through the sedation.
I don’t remember a lot of the worst details, but I do remember clutching David’s hands as he stood by my head (this wasn’t only traumatic for one of us), whimpering with tears streaming down my cheeks, saying something like “no, no, no,” or “stop, stop!” Imagine being tricked into being stabbed by a team of medical professionals taking turns to reload their hollow needles, as everyone in the room pretends it’s perfectly normal. It was exactly that horrific.
Afterwards, my mother-in-law joined us in the recovery room, where I continued to cry and whine. I was having trouble breathing, with sharp pains shooting through my right side whenever I inhaled. The nurse told me they must have hit the bottom of my lung in the procedure. This seemed particularly nefarious, and I became even crankier. As I’m sure everyone else who’s undergone multiple medical procedures knows, it’s hard always to be proud of your behavior while under sedation or anesthesia. I know I was a real pill that day.
I recently had my second run-in with Interventional Radiology. I really try to give them the benefit of the doubt, but they are not my favorite branch of medicine. Admittedly, I think they must have horrible jobs, because they routinely stab sick people and wind catheters through their arteries and who knows what else. I guess somebody has got to do it.
For this recent procedure, my splenic artery embolization, they told me beforehand that they would use twilight sedation. This reassured me, because every time I have twilight sedation for endoscopic procedures, I fall asleep all at once and wake up later in recovery, with no memory of the procedure itself. Of course, with Interventional Radiology, things weren’t so smooth and comfy. I was calm and quiet in the procedure room as they situated me and hooked everything up. They positioned my left arm on a board sticking out from the side of the table, so they could access the artery in my wrist and travel down to my spleen. Around that point, I felt all ready for the sedation to kick in. They gave me the first round and I felt calmer, maybe slightly sleepy. But I certainly wasn’t going out. I think I might have said something then, or maybe it wasn’t until I felt them start to work on my wrist, which they’d already numbed with a topical anesthetic in the prep room. By the time I realized they had started and I was still awake, I spoke up, but with difficulty. It was like wading through mud to get the words to the front of my brain, then onto my tongue, then out of my mouth. And when I finally did say something like “When am I getting more sedation?” or “I’m not asleep yet,” I sounded ridiculously quiet, like my voice came from the bottom of a well. I think I cleared my throat and tried again. I remember speaking maybe three times, and I remember being acknowledged at least once, as someone in the room struggled to hear and understand me. But maybe I’m wrong about all of this. It’s such a fuzzy memory.
Eventually I did wake up in recovery, so they must have successfully knocked me out at some point. But again, I felt unreasonably cranky in recovery, annoyed beyond belief that I hadn’t gotten the nice, soft, cozy sedation I’d been hoping for. I wasn’t in a lot of pain yet, but my whole left arm hurt, and this made me incredibly frustrated. I complained and waited for more pain medicine, which finally did come. But unfortunately, it didn’t take long for me to discover that a Dilaudid PCA isn’t as great as it sounds. When it only dispenses 0.2mg every 10 minutes or 6 times per hour (and only when you press the button, so tough luck if you fall asleep for more than 10 minutes), it can take an hour and a half to build up enough of a dose for real pain relief. I spent the rest of that day and that night in the hospital sleeping fitfully and trying to get over my annoyance that I wasn’t getting hit with those glorious waves of Dilaudid candy fluff you get with a 1mg IV push. But I went home on Dilaudid pills, which worked so well (much better for me than Oxycodone) that I’m using exclusively Dilaudid now for my routine pain management (combined with Tylenol and Ibuprofen, but no other narcotics). Still, my experiences with Interventional Radiology have been less than stellar.
After the liver biopsy in January, It took at least several days before my pain eased and I could catch my breath. And during that time, I began to consider what it really meant that I had just had my liver biopsied. If it was cancer, it was probably pancreatic cancer, considering my medical history. And if it was pancreatic cancer in my liver, that was not good. I remembered Eve Ensler’s cancer memoir, In the Body of the World, which I had listened to on audiobook the previous summer. At one point shortly after her diagnosis with uterine cancer, she thinks, “I know about the liver. Once the liver goes, the whole story goes.” I kept thinking of this during that week in January, waiting to find out if there was cancer in my liver too.
Finally, four days after the biopsy, on Tuesday, January 19, my GI surgeon called me with the results late in the afternoon. I had gone to acupuncture that morning with my aunt, who visited to be my chauffeur and companion. That afternoon, the therapist I’d recently started seeing came to my house for a session (out of her own generosity, since I was dealing with so much pain and medication then that I wasn’t driving). After that session, I took a nap, listening to a guided meditation on my phone. When my phone rang, I awoke from a deep and confused sleep, answered my phone, and heard Dr. Hirose’s voice tinny and distant, as if through water. I was so out of it that it took a few moments for me to realize that my headphones were still plugged in. Once I figured that out and got on the line with him, it took another few moments for me to realize what he was saying. They had found adenocarcinoma in my liver, in multiple spots. It was malignant. It was cancer. He didn’t have any more information than that, but he had scheduled me an initial consultation with the Pancreas Multidisciplinary Cancer Clinic at Hopkins, part of the Sidney Kimmel Comprehensive Cancer Center, for the following Tuesday. That left me a week to absorb this news, while still waiting to find out what kind of cancer I had and how serious it was.
I don’t remember if I cried then. Eventually I got out of bed and went downstairs to find David. As I was coming down the stairs, someone knocked on the front door. I think it was one of those Verizon sales calls they make on blocks that are wired for Fios. It was something like that, something meaningless and intrusive, that I had to smile weirdly through until the person left a minute or two later. Then we closed the door and David sat back down and I turned to him, probably with a look of utter devastation on my face. I sat on the ottoman at his knees and said I had to tell him something. I barely got out the words “I have cancer” before I started crying, and we held each other and tried to understand our new lives.