2016 March :: A Pain in the Neck | My experience with Hodgkin's lymphoma (& neuroendocrine tumors)

Melancholy

Today was a crappy day. I mean that literally. Earlier, I found myself crouched on the fairly busy sidewalk outside a Quest Diagnostics trying to transfer poop from one sterile container to another. But my lowest point, mood-wise had been before that, when I knocked over the specimen container in a public restroom and spilled whatever clear test liquid was in the container into the sink. As I waited in the Quest waiting room for a new container, I cried and felt deeply sorry for myself.

The Quest test is because I’m not feeling any better as far as the digestive issues go. In fact, I feel a little worse. I’m a little bit thinner—to my high school weight, which looks ridiculous on a grown woman—and a little bit weaker. Most days, I feel sick for a bit in the afternoon, followed by some mild discomfort, and then in the evenings, it’s nausea followed by some sweating, sleepiness and two bouts of discomfort before I get hungry right before bed (but am too afraid to eat). It’s almost a routine by now. (Right now, for instance, it’s after dinner, so I’m trying not to throw up, while I listen to weird noises emanate from within.) I had been on the BRATTY diet (bananas, rice, applesauce, tea, toast, yogurt) and it helped a little bit, but not much. (Another low point of this past week was when I made myself a toast sandwich and put some mustard and a few pickles on it so I could pretend I was eating a real sandwich but that each bite was just the end part.)

Even though recovery takes six to eight weeks, after five weeks, I should feel better than I do. Hence the need for samples to check for bacteria or infection. I was told to get a sterile sample cup, which I eventually procured at a nearby urgent care. When I arrived with my sample at Quest, however, I didn’t realize I needed three samples, and Quest doesn’t want you to contaminate their bathrooms, so I was sent off with gloves and two more containers to divvy things up elsewhere—outside, at home, in another bathroom. Anywhere but there. So I found a public restroom, and then knocked over one of the sample cups, spilling the chemical into the sink. (I was careful not to contaminate that bathroom.)

Dejected, I returned for a new sample cup. Quest was closing soon, and I didn’t have time to find a new bathroom, so I stepped outside to make the transfer. Now I feel terrible about it, but at the time it seemed like my only choice.

I’m also getting pancreatic enzymes, which CVS doesn’t have in stock, because I might not be producing enough digestive enzymes. I guess this is fairly common after a Whipple procedure. They are hoping that the enzymes clear things up in a week or so. If I do have enough enzymes, though, and these are extra, then I’ll get abdominal cramps, something I’m not looking forward to.

I’m tired of being sick, and I’m worried that I’ll never feel better. I didn’t expect this setback. I don’t always feel terrible, but when I do, it seems like a long time. I’m worried that I’m becoming bitter. I found myself jealous of the people who were heading into restaurants to eat, or running errands, or anyone who wasn’t carrying a container of feces with them, really.

After the stem cell transplant a few years ago, I felt optimistic as I recovered, but this time, I feel like everything I want and everything I thought my future might hold is slipping away from me, especially with such a strong likelihood that this cancer will come back within five years. Instead of a house or a family or vacations, I see bills, debt, loneliness. And I see death, too, as a possibility. Of course, it’s always there, I suppose, for all of us, but the high chance of cancer for a third time definitely puts me at a higher risk for that—sooner—and for a lower quality of life. As it is, all the chemo and radiation from earlier treatment has nearly put me into osteoporosis, something I found out right before I had surgery.

I find that I’m unfavorably comparing myself to everyone—friends, acquaintances, people I read about in the news, even book characters. I’m jealous and I’m worried that will crystallize into bitterness, and that scares me, because I don’t know who that person is.

Of course, I’ve been spending a lot of time by myself—more, as it turns out, with this blip in my recovery, than I thought. I had just started to venture out and eat real foods when I started to feel bad a few weeks ago, and now I mostly stay at home. If you have posted a vacation photo, funny animal photo or something witty online in the past month, chances are, I’ve responded immediately. I’m not even worried that people will think I have nothing better to do, because I really don’t.

OK, that’s not entirely true. I started working remotely last week, and that has been good for me. And I have a freelance assignment with a nice far-off deadline. And I take a lot of photos of the kittens.

So I’ve had too much time to think, which has left me death-obsessed, angsty, depressed and broody—basically my teenage self. (I guess it’s not just my weight that’s regressed.)

Keeping busy is good, but I can’t overbook myself since I have to have time for my bouts of physical illness, whether I’m nauseated or need a nap after walking too much. In My Age of Anxiety, which I am still reading, the author talks about Robert Burton, who wrote The Anatomy of Melancholy, a giant tome he completed in 1621 that has everything to do with melancholy, as the title suggests. Anyway, this quote from Burton seemed appropriate: “There is no greater cause of melancholy than idleness, ‘no better cure than business.’”

So here I am: Spending too much time with myself is depressing. I think some things finally fell into place: the fact that I had two different cancers, and that it’s probably going to come back, for one. Oddly, that doesn’t upset me as much, since I have little control over that. It’s everything that I do have control over that’s bothering me, and I feel as if I’ve made a lot of mistakes that I can’t undo. I feel like I need to do something, yet I also am afraid to do anything. I feel like everything I do is wrong.

Tonight, as I waited for my post-dinner nausea to pass, I curled up with the cats and called my mom. As I told her about my day, she said something that surprised me. “I don’t know how to say this,” she said, “but I’m pleased and proud of the way you’ve handled this.” She also said I didn’t complain much, and that also surprised me: I complain mainly to my boyfriend, but she would be a close second, followed closely by this blog.

After feeling like a dealt with a lot of crap today, it was what I needed to hear.

Recovery

I haven’t posted too much on my recovery, because it’s pretty boring and gross. It’s mostly sleeping too much or being in some sort of gastrointestinal distress. Honestly, it’s a lot of hoping to poop, or at least hoping to poop in some sort of normal fashion without a lot of drama. Recovery from a lot of major illnesses or surgeries reduces you to an infant, with an existence that revolves around sleeping, eating and pooping. This post won’t be graphic, but if you’re uncomfortable reading about digestive issues—and pooping—then you should probably stop reading.

Still here? Good. I myself have been pretty comfortable talking about my gastrointestinal tract and distresses ever since I spent a few months volunteering in Mexico in the summer of 1995 with a program called Amigos de las Americas. The nonprofit has chapters all over the U.S., where high school and college-age kids train for months and then go to various places in Latin America to volunteer in different projects. When I was a volunteer, for example, a few of the things you could do included going to Ecuador to vaccinate dogs, or go do educational things in Paraguay and Costa Rica, or go dig latrines in the Dominican Republic. I went to towns near Guanajuato, Mexico, to make estufas lorenas, stoves that were better for your lungs, and also to talk about dental health and distribute things to make cement floors that would be more sanitary. Most of us got a little bit sick while we were there, no matter how many precautions we took. After experiencing long bouts of gastrointestinal distress, you get pretty comfortable discussing it. Sometimes, now, I forget and say too much or maybe describe something too vividly and I have to remind myself that not everyone is as comfortable with discussions of bowel happenings. I mean, it’s not like I talk about it at dinner in polite company, but I definitely could talk about it at dinner in company not so polite.

I’ve had to allow my digestive system to learn how to work again twice, but this time, with all the re-routing and removal of organs/organ parts, it’s been much more intense. I have so much more respect for babies. No wonder they cry. Gas pain and the general woes of digestion and elimination are no joke. I have nearly been brought to tears. One of the doctors said that some people find the gas and gastrointestinal discomfort to be worse than the incision pain, and I agree. As an adult, it’s kind of humiliating to having your life go back to that of a baby. It’s not as pleasant and relaxing as it sounds. You really have to sleep a lot and devote so much energy to eating and then not throwing up or pooping too much and dealing with gas pain and momentous burps. Poor babies.

It’s been three weeks since my surgery and I’ve been getting impatient, but the doctor reminds me that it’s been only three weeks since my surgery. From the outset, they said full recovery takes six to eight weeks. I had hoped that by now, I would be able to eat with less drama, but I still have gas pain and extremely unreliable bowels. Today, I decided to take the train to the doctor’s office, since it was in the middle of the day and people would be less likely to jostle me or ram into my incision. (Also, I am cheap, and cabs are pricey.) I had my usual quarter of a bagel before I left, but then regretted it. I thought about getting off the bus and catching a cab but I’d already invested $2.75 on my bus ride.

Once I got to the doctor, though, I felt a little better. (One nice thing at the MSKCC offices of doctors dealing with these issues: the exam rooms have bathrooms attached, something that is welcome in many patients’ situations, I’m sure.) He says my incision is healing nicely and I need to be patient. I’m going to feel tired, he reminded me, because my body is healing and devoting all its energy to that, and not much is left over for me. The Whipple is a big deal, and I was sliced open and things were removed and my digestive system was rerouted, so I suppose it’s pretty amazing that recovery takes only a few months.

I’ve been trying to go off the Oxycodone and the laxatives, but it’s a tricky balance. So far, giving up laxatives haven’t been a problem, and I haven’t needed them at all. My doctor suggested I try to eat some Activia for my digestive tract. I still have periods of time when I’m pretty miserable without the Oxycodone, which seemed to have helped with some of the gastrointestinal issues. I’ve been a little nervous about the Oxycodone. I don’t like the idea of taking it, though I never have any of the “fun” that people associate with “good drugs.” I had to take a big dose when I was fending off a pancreatitis attack about a month ago, and I felt better for about a half an hour and then I threw up.

Against my better judgment, I took the train home from the doctor’s office, and of course, the coffee I’d unwisely had while I was there hit my bowels while I was in the bowels of the city. I started to sweat so much, I felt like I was sweating through my jeans. Desperate, I finally had a pain pill hoping it would quell the rumblings in my abdomen. The good thing about the train is that being a sweaty lady popping pills doesn’t even put me into the top 10 percent of weird things happening.

By the time I emerged from the train to catch the bus, I was feeling OK, but still relieved when I saw the bus was coming right away. I made it to my stop and even popped into the community garden when I saw the gate was open to take a photo of my first spring crocus emerging from my plot.

Still, it’s best that I’m near a bathroom at all times. I just had about six of those pretzels with peanut butter inside and my bowels are now a roiling mess and my insides hurt. I feel like someone is pumping air into my belly and I might explode like a cartoon character. It’s seriously loud, whatever is happening. I’m worried I’ve ruined my dinner. It’s been hard to eat when you know it’s going to be followed by so much drama. People always ask what I can eat, and I answer I can eat whatever I want. I’ve been eating pretty normally lately, but just in very tiny portions. I found out the hard way yesterday that if I eat too fast, I’m rewarded with belly pain.

Today’s food, however, could be a quarter of a bagel and six peanut butter pretzel bites, and I can’t let that happen if I want to get my digestive tract on track. Earlier, one of my kittens ate an ant that made its way into the apartment, so surely I can at least find it in me to eat some yogurt.

I’m OK for long stretches of time, with pockets of sleepiness and times when I’m doubled over in gastrointestinal pain or discomfort. That’s how recovery is going—more slowly than I’d like. As the doctor reminded me, I need to be patient. Three weeks down, three to five weeks to go.

Bills: The Real Pain

Right now, the healing incision in my belly and the adjustments of my newly rearranged organs give me pain, but nothing really ever compares to the pain of hospital bills, does it? Go ahead and tell me that you’re going to shoot so much poison into my veins that you will have to harvest my stem cells to rebuild my immune system. Make me lie down for long periods of time while you radiate my organs and burn my esophagus so much that I cough pieces of it up weeks later. Slice me open and remove organs and organ pieces and reroute my digestive system so that I’ll end up spending hours in gaseous pain with sore abs. I can handle that, even when I have moments when I am sure I can’t anymore.

Show me a hospital bill or an explanation of benefits, though, and my eyes glaze over and I fall apart. I’d rather deal with gauze than red tape. I will try to put on a brave face while nurses try to find a vein in my beat-up arms, but when it comes to the bills, I want to cry and scream that I just don’t want to. A phone call with hospital billing or insurance lasting more than a few minutes throws me into Kafka-esque pits of existential despair. When the bills arrive, just looking at them makes me want to eschew modern society, but then I remember that I am a product of the modern age and would do terribly in any other period of time. I know I need to stop being such a baby and learn how to deal with this stuff.

Still, figuring out medical bills and health insurance is hard for everyone—even for people smarter than me. Some people who even deal with this kind of thing for a living come across snags in the system. I once heard a story from an insurance/HR person who had an MRI done at a hospital that was covered by her insurance, but—surprise!—a doctor not covered by her insurance showed up at some point and ended up on her bill. Eventually, she had it taken off her bill, but the health care system is often a huge pain.

My billing experiences with Sloan-Kettering have been pretty straightforward (knock on wood) and last time, my insurance company was pretty good about working with them. I hope that’s the case this time. It’s one of the reasons I opted for MSKCC over NYU Langone for my Whipple procedure. I feel constantly confused by NYU Langone’s billing system, and after some conversations today, it seems as if they, too, are confused by their billing system. It comforts me to know that I am not alone, but it alarms me that the very people sending me bills are also confused.

Yesterday, I got an automated call letting me know that I had to pay $275 to NYU Langone or it would go to collections. I was given the option of paying right away, but I didn’t have a credit card handy and I wanted to look into it. I wrote down the amount and then called back today to try to pay it. I called the number to pay a bill, but then the person said it couldn’t be handled at that number because it wasn’t a hospital bill, but a doctor bill, and apparently those are handled separately because that’s not confusing at all.

I was transferred and I asked about the $275 bill, and they said I had a $500 bill and $50 past due bill (the one, I think, that pretty quickly went to collections and that I just sent a check out for). But what about the $275? No one seems to know anything about that amount. She transferred me to another number and told me to press option #2, which I did, and then I ended up with her again. She apologized and said there must be a high volume of calls and told me they would call me back.

In the meantime, I tweeted to NYU Langone and got a reply to call Patient Relations. I called Patient Relations, but they said they weren’t the people to talk to. The woman there was nice and tried to be helpful, but in the end, I don’t feel as if much was accomplished. She was going to suggest someone in a financial department, but they handle only inpatient bills (it seems as if there are a lot of divisions when it comes to bills). She said there’s a $200 balance (separate from the $500 and the $50, I guess) that won’t go to collections for another three months, but I am free to call and pay that now.

I still don’t know where the $275 or the automated call came from. It’s possible, she said, that the call came from billing. But why such an arbitrary amount? I feel like a frightened retiree they’re trying to swindle. They are one step away from calling and telling me I’ve won a free cruise. In the end, I spent about a total of 25 minutes on the phone today and got no real answer, paid no bills, and am still unsure about what happened.

In the meantime, I think I’ll ignore NYU’s confusing bills, though I have a nagging suspicion that one of them is going to collections somewhere. Hopefully by then, I’ll be on an island somewhere enjoying my free cruise after I hand over my Social Security number.

Update: After an all-day back-and-forth, I finally spoke to someone, paid part of the bill and got on a six-month payment plan. There’s no record of the mysterious automated call that I got, which is weird.

Post Whipple: Good News, News That Could Be Potentially Bad in the Future

Today, I went to the doctor and got the staples removed from my belly. I joked that they would have a staple remover, like you have in an office (or had—who uses staples anymore?), but that’s pretty much what it was like. The nurse practitioner removed the staples and put some butterfly bandages on there for the next week or so. She also assured me that I wouldn’t burst open, which is my illogical worry. (Even with her reassurance, I know it will be months before I can move without half-expecting to pop open.)

As alarming as it was on Friday night to wake up with a big sticky spot on my T-shirt from my leaking incision, the leak was normal and seemed to stop. It was apparently just fluid that had collected under the skin and seeped out. The good news is that I am on track and healing nicely.

Delicious macro bowl

I still have weeks of recovery ahead. Sometimes I still find myself doubled over in gastrointestinal distress. Getting my digestive system back on track is tough. One of the doctors said that some patients find the gas/digestive pain to be worse than the incision pain. I still have very little appetite, and it’s tough to be motivated to eat when you know it could mean cramps and misery later. Still, my boyfriend is making me plenty of good food. A friend stopped over this past weekend to bring me a macro bowl she made full of good, healthy ingredients (including black rice, quinoa, avocado, asparagus, chickpeas, carrots, kale, mushrooms, carrot ginger dressing) and some vegan cinnamon ice cream. I can eat only little bits of food for now, and it takes about 6–8 weeks for the appetite fully to return, I am told.

This is what I looked like during my nap yesterday.

This is a much cuter version of what I looked like during my nap yesterday.

Some days I stay up all day long, like this past Sunday, and other days, like yesterday, I rest my eyes for a bit and sleep the afternoon away.

We had a chance to ask the doctor about the neuroendocrine tumor coming back. The odds aren’t encouraging. There’s more than a 50 percent chance that I’ll get another neuroendocrine tumor within the next five years, probably in my liver. They are going to monitor me fairly closely. Once it comes back, there are a variety of treatments: medication, chemo, or burning the tumor out. I have a follow-up with my doctor in a month, and I’m also meeting with a neuroendocrine tumor specialist that day.

It’s not the greatest news that I’ll basically be waiting for this tumor to reappear over the next five years. I know some people will say that I should focus on the chance that it might not come back, but please allow me to indulge my pessimist within and point out that, according to the odds, my Hodgkin’s lymphoma should have gone away with six months of chemo, I shouldn’t have had two types of cancer at the same time, and neuroendocrine tumors themselves aren’t all that common. We also asked why, after hanging around for years, the tumor became aggressive all of the sudden, and there’s really no answer to that. These neuroendocrine tumors sound tricky.

In the meantime, I just need to focus on recovering from the Whipple procedure. In the future, I’ll have to figure out how to live with the threat of the cancer returning—specifically how to prepare for its possible return without letting it cast too big of a shadow over my life. I’ll also have to really sit down and take a hard look at the long-term effects cancer is going to have on my life, from finances to long-term goals that just might not be possible anymore. I don’t think I can pretend like I can go back to “normal” or at least the way things were before. This last scan gave me the all-clear as far as Hodgkin’s lymphoma was concerned, but this new neuroendocrine tumor info makes me think it’s time to make a new plan.

Charlotte inspecting my care package.

When I wrote my last post, I was feeling pretty low. I didn’t want to deal with cancer anymore. Sometimes, when you put your head down and go through something like an illness, you want a break. You just want a few days off from being sick. Most often, you can’t take a break. Yet, in a certain sense, I did get a break. I had a year “off” from cancer in between my stem cell transplant recovery and my first pancreatitis attack. I’m glad I had that year to really enjoy myself and not worry too much about cancer’s return. I’m going to be getting some time off again, though I can’t say for how long. (Maybe forever if I’m feeling optimistic.) It will give me time to build up some strength and, of course, enjoy some cancer-free living. We have a fun summer planned.

Drawings received, including a health care companion.

After my last post, I was reminded how lucky I really am and how my pity party was unwarranted. I received so many nice and supportive notes and thoughtful messages. I’ve been receiving cards and visitors this week and weekend and my boyfriend’s family even made me a goofy video to cheer me up. Just this past week, I received an orchid and I got a package from my co-workers full of fun stuff, including a cat lady activity book, a bell to ring to summon my boyfriend and an inflatable wizard hat for the cats to wear. Now that the bell and the hat are out of the packages, my boyfriend and cats seem less enthused by them, but I am delighted. I have had a lot of snuggle time with the kittens.

Me and my wizard cat.

As much as I’m not looking forward to the likelihood of another bout with cancer, I have plenty of better things ahead.