apainintheneck :: 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.

I Can’t Even

After falling asleep while reading in bed and waking up with my head tipped back and my mouth hanging open, I went into the bathroom to brush my teeth. When I got back to bed to settle in for the night, I noticed that a big spot on my T-shirt was kind of wet and sticky. I realized that the top part of my surgical incision has been leaking. It seems like the fitting end to the day—at least I hope it’s the last sad event of a bittersweet day and not the beginning of another sad day.

I changed T-shirts and called MSKCC’s hospital number for a professional opinion. The doctor on call said that unless I had a fever or didn’t stop leaking for a few days (!) I should be OK. My body might just have excess fluid that it is trying to get rid of. Currently, I’m sitting on my couch leaking my excess fluid out of my belly. While I’m sitting here, alone and scared, I figured I could cry some of my excess liquid out too. It hurts my abdomen to cry too hard or to laugh too heartily, though, so I’ve been trying to keep my emotions in check since surgery.

Today, as a day, hasn’t been particularly rough. I spent a lot of my time on the Internet and watching TV and I think maybe staring off into space, as I’m still taking painkillers for the belly pain.

At some point, however, I realized that it was three years ago on February 26 that I was diagnosed with Hodgkin’s lymphoma. If someone told me in 2013 that three years later I would be recovering from surgery for another type of cancer, I would have said, “No, thank you.”

This particular day, over the past several years, has had its ups and downs. Three years ago, obviously, was tough, when my doctor called me in to tell me that my needle biopsy showed I had Hodgkin’s lymphoma. The treatment was supposed to be wrapped up by September of 2013, but since I had two spots that wouldn’t go way (one lymphoma spot and the other, as it turns out, this pancreatic tumor), February 2014 saw me trying to remove stubble from my head after one round of augmented ICE chemo, preparing for my stem cell transplant. In my Facebook feed, a photo from that day showed up. It was a bittersweet picture: My recently departed cat, Akasha, putting a comforting paw on my hand, since my arm was inflamed with phlebitis at the time and I was in a lot of pain.

Akasha comforting me two years ago, when I had a case of phlebitis.

Last year was good—so good, I didn’t even commemorate it with a blog post. I think I was too busy having fun and getting my life back. I’d passed my January scan and had just started a new full-time job. I was done with cancer. The little blob on my scans was just something to keep an eye on, but nothing to really worry about.

Today, of course, I spent as part of my long recovery from my Whipple procedure to remove the neuroendocrine tumor from my pancreas. (I still have about six and a half weeks to go.)

I tried not to think about this anniversary too much, until I woke up realizing I’d sprung a leak and found myself too afraid to go back to sleep. Even now, all I can think is that I’m simply tired of having cancer. I feel like I just can’t anymore.

I had been talking to some cancer patients before my surgery for a story I had been working on, and one woman going through treatment told me how she and her husband ” just go through it.” There’s no other way to put it. You just go through it. No one gives you a choice to opt out of cancer. If someone did, I would have said after the first year that I would not like to deal with cancer anymore, and I would have said it after the second year, and I would say it this year too. But no one is asking, and even if someone did ask, it doesn’t matter, because I still don’t have a choice.

I try to stay upbeat and put on a brave face, but I have these moments. I am scared and I’m so tired of cancer already. I don’t want do to this anymore, but I just have to keep going.

In the meantime, while I’ve been writing this, I think I’ve stopped leaking, both from my belly and from my eyes, so my mind is at ease. Now I’m going to wrap myself up in blankets and get some rest, to prepare for the better days ahead.

After My Whipple Procedure: Home From the Hospital

Exactly one month ago, I posted the news I received about a malignant tumor on my pancreas. Today I am one week out from my Whipple procedure. Post-pancreaticoduodenectomy, I have no gall bladder, 16 fewer lymph nodes, a little bit less stomach and duodenem—and, of course, no more tumor.

I have been meaning to post an update, but everything has happened pretty quickly. As the February 17 surgery date approached, I was also doing the much-too-familiar rushing to a stop before a hospital stay, and trying to finish everything I could before having to rest—cleaning, social outings, work, freelance projects, working out. So many times I wanted to sit down and write to help me process what was happening, but I felt like every waking moment was booked. On my first full day back from the hospital and reunited with my laptop, I finally have time for an update. I’m sure I’ll have more ramblings as I impatiently await full recovery, but here’s the rundown on what’s happened in the past month.

After the findings of the endoscopy, I met with a surgeon at NYU Langone and one at Memorial Sloan-Kettering Cancer Center. Dr. Elliott Newman at NYU went over the endoscopy results, which showed the tumor blocking my pancreatic duct, thus causing the backup of digestive enzymes and recurrent pancreatitis attacks and inflammation. Though the biopsy didn’t determine if it were a neuroendocrine tumor or an acinar cell carcinoma, the treatment would be the same: Removal of tumor (along with the gall bladder, part of the stomach and a bit of intestines) with a surgery called a Whipple procedure. Since the tumor was in the head of the pancreas, where are lot of ducts intersect, it’s not as simple as removing the tumor, and there’s rerouting and reattaching. Dr. Peter Allen at MSKCC also said that I would need a Whipple and the type of tumor it was would be determined after taking it out. The only reason to do another endoscopy and biopsy would be if I wanted to put off the surgery for a few months. The doctors put my mind at ease about one thing—removal of the tumor didn’t seem really urgent. In fact, they said that a small tumor, less than 2 centimeters in diameter, would often just be watched, but this was clearly causing me problems and pancreatitis attacks.

NYU Langone had my pancreatitis and endoscopy records and MSKCC had my oncology records so I had to choose between the two. I feel as if I would have been in equally capable hands either way, and having the choice between two such reputable institutions isn’t a bad dilemma to have. Ultimately I decided on MSKCC because Dr. Allen could do the Whipple soon (even a week earlier, had I chosen that date, but that seemed too soon), and I was already very familiar, of course, with Sloan-Kettering. I had also used my current insurance with MSKCC and NYU’s billing system seemed a just little less clear and quick to go to collections. At least in my case, I have had more billing headaches with NYU.

Transferring medical records from one hospital to another is also an enormous pain—one that involved multiple phone calls, faxing, a $45 slide fee to get my biopsy results from NYU, a trip to the doctor’s office to get records that weren’t even what the other office needed. In the end, I was so equally annoyed with both, it didn’t factor into my decision.

I tentatively scheduled my surgery for the 17th, and I had pre-surgical testing the Friday before. I needed to reschedule my lymphoma follow-up CT scan from Feb. 22, so I moved it up earlier. If they found the Hodgkin’s lymphoma was back, they would have to treat that first, and everything would have to be rescheduled, so I didn’t really have an all-clear for the surgery until I got the results on Feb. 8. The good news is that my Hodgkin’s lymphoma is still at bay. If I didn’t have the pancreatic tumor, I would be given the green light to move ahead with my life without scans. From the lymphoma perspective, I am done, but this pancreatic tumor means I won’t be done with abdominal scans any time soon.

I had been having lower abdominal pain, and became convinced that if I could harbor two types of cancer at once, why not three? I scheduled my annual women’s wellness checkup that I had been putting off because of my insurance’s refusal to pay for some test they deemed superfluous (because if there’s one thing women love to do, it’s taking unnecessary pelvic exam tests so we can charge insurance companies, right ladies?) and then had to take a follow-up ultrasound. By that Wednesday, as I awaited my ultrasound and my follow-up lymphoma CT, somewhat convinced that I was probably teeming with cancer, I was in a pretty dark place. Oddly, once I was cleared after the ultrasound and CT, I felt celebratory that I had just one type of cancer.

In those weeks, I also wanted to take care of some other things I’d been putting off, like going to the dentist and getting new glasses and contacts. (On another happy note: I have spiffy new contacts that are a meld of hard and soft lenses so I can see details for the first time in years.)

Whereas the stem cell transplant was months of preparation, with the Brentuximab trial, the ICE treatments and the stem cell collection, the lead-up to surgery was really fast. In a way, this was good—I didn’t want to have too much time to think about it. I did my share of freaking out and worrying just within a month, but I was also so busy, I didn’t have much time to dwell on anything.

I had actually considered putting off the surgery for a month or two until a big work project was finished and until I could go home for my mom’s other hip replacement surgery. I had been urging her to have the other hip replaced as soon as possible when she went to her scheduled February follow-up doctor’s appointment, because I know it has been really bothering her. It felt selfish to have my surgery first, with its 6–8 weeks of recovery time. But I didn’t want to have to do another endoscopy to check the tumor and my pancreas has been bothering me—a lot. I haven’t been 100 percent comfortable since the beginning of October, when this all started. Some days I worried I should go home first and take care of my mom, and other days, when my pancreas sent out twinges of pain all day, I would have gladly opted for surgery immediately if possible. The Thursday before surgery, my pancreas hurt all day and I stood in the kitchen after breakfast holding my yogurt spoon, thinking that if I could scoop out my pancreas tumor right then and there, I would. I ended up getting some pain medication and going home early. An acute pancreatitis attack may have delayed surgery and so I thankfully made it through the weekend.

Wednesday finally arrived, and we got to the hospital at 5:45 am. The doctor asked if I was nervous, but I wasn’t. I was excited to get this out. It is weird, though, to know that you’re going to go under and then wake up sore with pieces of you missing. I’m pretty squeamish, so I don’t like to think about it. I got put under and in a few hours, my Whipple was done! The doctor told my boyfriend—and me, when I woke up—that the surgery went well, there was minimal bleeding and that even though the tumor was small (just about 2 centimeters at its widest point) the pancreas had been pretty inflamed. This was the first indication that it was a good decision to have my surgery sooner rather than later. (And that feeling vaguely sick for the past months hadn’t been all in my head.)

The second indication that a speedy surgery was the right decision came when the doctor talked to me about my pathology report before my release from the hospital yesterday. The tumor was a neuroendocrine tumor, as they initially thought. This is good news. However, it’s a well-differentiated tumor. I’m not sure what this means other than that it’s more likely to come back. The tumor had been increasing in size recently and becoming more aggressive; it had spread to one lymph node, out of the 16 removed. I’ll need to be monitored, with scans at least every four months for awhile. If it comes back, it will probably show up in the liver. I asked what I could do to prevent recurrence, and he said just to avoid smoking, which isn’t difficult.

The best part of my pathology report was the description of my gall bladder, which sounded magnificent: “green and purple” with a “smooth” surface that opened to “reveal an abundant amount of bile and a smooth velvety mucosa.” I’m a little sad about the loss of such a lovely organ.

Next week, I have a follow-up appointment, and I can ask some questions. Mainly, I am confused because if I have had it for so long, why did it suddenly become aggressive recently?

After I got home yesterday, I didn’t feel very celebratory, because I had hoped for the very best news—that recurrence was unlikely. I wanted to walk out of that hospital again and hope that I never had to spend a lot of time there. Also, now is the hard part on my end: Recovery. I spend a lot of time feeling blech, bloated and like the staples on my stomach are going to burst open like a piñata, releasing my remaining organs. I spend a lot of my time trying to pass gas and longing for smoothly working bowels, as my digestive system wakes up and learns how to work. I always feel like I’m in the middle of an ab crunch, and I constantly feel like I’m sitting wrong—either too far forward, or too far back. My back hurts. The skin around my staples is lumpy.

A friend texted yesterday to remind me that this is good news and very importantly, this is temporary. She’s right, of course. I’m happy that this pancreatic tumor is behind me and I’m looking forward to not always feel vaguely sick as I have for the past several months. Feeling better is just around the corner, and it is good to be home.

Pancreatic Cancer

On Wednesday, I received the results of the biopsy of my pancreatic lesion that they took during my endoscopy last week. I haven’t had that much time to process the results, because I was dealing with the declining health of my 17-year-old cat, who died on Friday.

Remember that spot that kept showing up on my PET scans, the one that the lymphoma doctors said was probably a benign tumor but that we’d keep an eye on? The biopsy showed that it is a malignant tumor on my pancreas.

With Hodgkin’s lymphoma, you’re often told that you have the “good cancer.” I know that people with Hodgkin’s lymphoma don’t feel especially lucky, particularly those with refractory or relapsed Hodgkin’s lymphoma since we’re in the group that didn’t get better with the first round of treatment and had to follow up with more chemo, radiation and stem cell transplants.

No one tells you how lucky you are to have pancreatic cancer. In fact, the news is met mostly with silence. The statistics are grim. But, once again, I am in what’s considered to be a lucky group (so far). I have either a malignant neuroendocrine tumor or an acinar cell carcinoma, which is pretty rare. If it’s the former, the odds are good—as high as 50–70% for survival five years down the line after a complicated pancreas restructuring surgery called a Whipple procedure.

The next step is to meet with the surgeons to see if they would want to do more tests—either another endoscopy or a scan—to see what type of tumor it is before operating. My appointments are for next week.

I’m not going to lie—this isn’t good. Best case scenario: It’s the tumor with the better prognosis, the cancer hasn’t spread beyond the tumor and it can be removed with the surgery. Then once the months of recovery are over and if there are no complications, I can go back to a semblance of “normal.” (And then hope it doesn’t come back.) I’m not going to delve into the other possibilities right now until we know more. Right now, this is just conjecture.

I suppose the good in this is that there are really no known causes of this type of tumor—it’s an unlucky fluke. When I was dealing with the pancreatitis attacks, I spent a lot of time beating myself up, thinking that maybe I had caused them somehow, but at least I am absolved of that.

I realize that initially seems strange thing to say, but it makes sense. Right now I’m reading My Age of Anxiety, a book I recommend for anyone who, like myself, is prone to anxiety. The author, Scott Stossel, mentions a woman, a war correspondent, who suffers anxiety not when she’s being shelled, but after she submits a story and is waiting back for editor feedback. Stossel writes, “Freud observed that threats to our self-esteem or self-conception can often cause far more anxiety than threats to our physical well-being.” When I felt that this was something in my control, I felt really terrible—it kept me up at night and was an ever-present, gnawing feeling. I felt bad about myself. Now I just feel bad.

That’s not to say that I don’t wish I had insisted on getting a biopsy earlier. I’ve been through cancer before, and I know that something innocuous can eventually mean a cancer diagnosis. I should have known better. There was a spot on my PET scans lighting up. How could I dismiss that? I know the reasoning was that it had gotten smaller so we were just going to keep an eye on it. But, as happy as I am to have had this relatively “normal” year-and-a-half, I wish that someone—myself, my doctors—had decided on a biopsy before the pancreatitis attacks. In retrospect, it seems crazy to have ignored the spot on the scans, but I wanted so badly to be better.

That I’ve had it for so long and it hasn’t seemed to have spread from what they know so far could be a good thing—it could mean that it’s slow-growing and not aggressive. I am worried that it’s causing problems now, and, of course, now any bodily pang or twinge of discomfort worries me. I don’t know how to describe it, but lots of stuff just feels funny.

Part of me doesn’t feel like talking about this and needs to go on as normal. Another part wants to freak out. I don’t have many reflections to share. The name of this blog isn’t even accurate anymore. There really are no words for all of this.

Aside from cancer’s insistent intrusions, I still really do have a great life. I can attribute this directly to the people in it. For now, I’m enjoying the snowy weekend, relaxing and snuggling with the kittens before I re-enter the world of scans, doctor appointments, blood draws, tests and hospitals.

Goodbye, Little Buddy

Yesterday, we said goodbye to Maceo, a gentleman among cats and a sweet, good-natured, lovable, all-around good guy. At 17, he was considered pretty old for a cat, but, until this last week, he was in fairly good health and remained a kitten at heart.

Maceo was very patient with all my picture-taking. Here he is with me and his portrait in December 2012.

I can’t believe he’s gone. He lived with me for 16 years. Aside from my mom, who I lived with for almost 18 years before going to college, I’ve never lived with anybody that long. When I was looking for photos of him to post, I didn’t think I had one of him with his painted portrait and I almost went to look for him to take a picture before I remembered that he wasn’t going to come to me when I called his name.

Maceo leaves behind a big gap in our lives. Literally. He was a big kitty. Whenever I would take him to the vet, people peering into his carrier would exclaim, “Oh, what a big cat!” as if I were transporting a mountain lion. But the large gap that he leaves is because, like his companion, Akasha, who left us several months ago, he had a lot of personality.

Maceo had a peaceful nature. When I lived in a house in Ohio, I would sometimes let him out in the backyard because he loved to sit among the plants, blissfully sniffing the flowers and sunning himself. He never bothered the birds or the neighbors’ five-pound Yorkie, who was afraid of cats. The dog and Maceo achieved a pact, sniffing each other through the fence in a silent agreement to not bother each other. My neighbor said it was the closest his Yorkie had ever been to a cat. (Akasha, on the other hand, couldn’t be outside much because she was a cat who had to hunt everything, including the tiny dog; I once caught her lurking among the plants in my garden, ready to attack as the Yorkie blithely ran around his yard, unaware of the nearby danger.)

Like Akasha, Maceo served as an artist muse. Here he is last month with a drawing of his likeness.

Maceo was a gentle soul who never wanted any trouble. Occasionally, a neighborhood cat would enter the Ohio yard, and Maceo would retreat. Once, he walked out and was greeted by the hiss of a cat outside. Maceo simply backed right up into the house, as if he had been rewound.

Aside from a phase in kittenhood when he loved to bite socks with feet in them, I never had to warn visitors of any behavior. Well, they had to watch their snacks, but that’s about it. At parties or gatherings with food, as guests filled up and eventually drifted away from the snack area, the cats would plot a way to get food, each displaying different tactics. Akasha would use the sneak attack, quietly edging her way to the unattended bowls and plates, whereas Maceo would tend to lunge for the bounty, eating as much as he could before being shooed away.

Though Maceo would bat around the occasional mouse, he preferred stationary prey—the fallen bit of cheese, an unguarded hamburger, a chip that had strayed from the bowl and sat out alone and vulnerable. Once a big sliver of potato chip fell onto a nearby end table and I saw his white paw emerge from underneath the table and quickly grab it, followed by a crunch.

Maceo was a handsome kitty with a lot of personality.

For a cat, Maceo was notoriously clumsy and lacked feline grace. He always fell off things, and he never quite understood the burying of things in the litterbox, just reflexively pawing in the general area without really covering much. Handsome Maceo was interesting-looking as well. When I first got him, a friend described him as a “Frankenkitty, like someone took a whole bunch of other cats and sewed them together.” He was a mix of a tabby and a white cat—a tabby tail with tabby ears and spots of tabby coloring; people often remarked in his striped spots. I always felt as if he were the last creature made at the animal factory that day, assembled with stray bits of cat fur and a cat body, with perhaps the soul of a dog, and all the leftover good nature and sweetness they had to use up before they mixed a fresh batch to put in the creatures scheduled to be made the following day.

Maceo was my first cat, the high standard to which I hold other cats. When we recently were in the market for cats, I had a hard time looking at cats that didn’t grab my attention the way he first did. The day before my 22nd birthday, my boyfriend at the time picked me up from work during lunch break and took me to Cat Welfare, a local cat shelter in Columbus, to surprise me with a cat. As we walked through the shelter and by the cages, one cat, a white cat with tabby markings and a distinct meow, meowed so insistently that I decided to take him out and see him. He purred and got fur all over my fleece pants. I put him back, though, because I had my heart set on getting a black cat. After looking at some black kittens, I decided on a big black cat that my boyfriend said was ugly. But the cat ran away from me and hid. My boyfriend had to get back to work and suggested we come back another time, but I wanted a cat that day. I thought back to the sweet cat who had stayed by my side and was still meowing in his cage and I impulsively said I would take him instead.

Maceo was a sweetheart.

Looking back, it makes me really sad that I came so close to not having Maceo in my life. He was about a year old, declawed and neutered when I got him, so he had clearly been someone’s pet. I think he must have wandered away from his original home and gotten lost. He is named for the Jane’s Addiction song “My Cat’s Name is Maceo,” on which Maceo Parker plays. The lyrics seemed fitting “My cat’s name is Maceo/he’s a little man in a cat’s body” and “We went down/down to the pound/ and that’s where we saw Maceo/Cat catcher said to me, ‘Go ahead and pick one out’/and Maceo said ‘Let meow-t.’”

Maceo with Charlotte, in his favorite chair with his favorite blanket.

When we got the new kittens, it felt right. Charlotte (named for the Cure’s “Charlotte Sometimes”) was trying to steal a toy from a neighboring cat’s cage, while Ziggy (named for “Ziggy Stardust”) chilled out in his litterbox. I had pictured the three cats having more time together, and I’m sorry that the kittens won’t be able to learn from Maceo and know what a magnificent cat he was.

I wanted Maceo to be a fine example to Ziggy.

Maceo’s decline was very swift. He started throwing up and not eating last Friday night, and ended up at two vet appointments and three emergency room visits within the past week. They tried fluids, steroids, pain medication, anti-nausea drugs, appetite stimulants and antibiotics, expecting them to work each time, but nothing seemed to help. We were really optimistic last Sunday when they said we could take him home. By yesterday morning, he was so sick, we knew it was the end. It was so terrible to see such a vibrant cat so sick and visibly miserable and in pain. I am glad he didn’t suffer for very long and was able to enjoy his life without much illness.

I miss him. He would answer to his name and would come when you called him, even if meant getting up from a warm, sunny spot on the bed or when he was curled up in his favorite chair. It’s strange to not have him greet me, without fail, at the door when I get home. The apartment’s a little quieter without his little stomp-walk across the floor, though the kittens are zooming around at full speed. They have big shoes to fill.

Goodbye, sweet Maceo. I hope wherever you are, you are united with your old pals Tabby and Akasha and it is a place filled with all your favorite things—cardboard boxes, sunshine to bask in, plants, catnip, smoked meat sandwiches, ice cream and someone to stroke your soft fur. I miss you, but I can’t think of you without so much joy. I love you, little buddy.

Maceo as a Game of Thrones dragon.

Maceo and Akasha as kittens.

Waiting

A year ago yesterday, I received the good news that my second scan post-stem cell transplant had come back negative. I had thought about ending this blog on that note—a happy ending. But sometimes I need to write when I’m sad or need to sort things out. I realize that most of my postings here have been bummers, despite all the good things that happened within the past year. When I started this blog and looked at other cancer blogs, most of the updates stop after the treatment ends—after that, people are busy living their lives, returning to “normal.”

That said, it’s been a year of extreme ups and downs. This year was, for the most part, an amazingly good one, full of fun, friends, family and a flurry of visitors this summer. I didn’t write much about it, because I was too busy having fun.

The downs were mostly the past several months: My 16-year-old cat Akasha died in September, my mom needed hip replacement, and I’ve had two acute pancreatitis attacks. Right now, I am in limbo, waiting for the results, which are supposed to come this week, of an endoscopy. Today, though, I hope to hear more about the health of my beloved 17-year-old cat, Maceo. He had been throwing up all day and not eating yesterday, so we took him to the vet, who gave him some anti-nausea medication. I felt optimistic as he received compliments on the street and on the bus ride home. I settled in last night to keep an eye on him, but he kept throwing up and got much worse. I couldn’t will him to get better, but doing anything else felt like a betrayal. Necessary acts, like eating, seemed absurd. A little after 11, he ended up at the emergency vet, where he is now for fluids and observation.

The past few days have been a mixture of both the extreme highs and lows. As I write this, two kittens play at my feet. We got the pair of tabby kittens last Sunday, and they are particularly adorable and sweet—as cute as kittens can possibly be. It is such a joy to watch them discover new things. Like Maceo and Akasha, they have lots of personality. I want to spend all my time with them. Now I understand when mothers say how hard it is to leave their new infants, except that kittens are cute. (I kid.)

Yesterday, I felt so incredibly guilty, as if getting the kittens had caused this somehow. I’ve heard that old pets sometimes die when a new pet comes into the household because they feel as if they can go. I love Maceo so much. I still need him. However, after talking to the vets, it seems as if the timing is just coincidence. He is going to get tests to see if this is small-cell lymphoma, as Akasha had, or if it could be something like pancreatitis. (Is it possible for animals to get sympathy pains?) The hope is that they can give him so fluids and get him eating again and then take the next steps to treat whatever it is that is wrong.

This whole situation seems very familiar, like Akasha’s decline and death. I’m trying to remain optimistic, but I’m terrible at it. I know that phrase “worrying is like praying for something you don’t want to happen,” but I am a worrier. I come from a long line of worriers. Worrying is pointless, but it feels like I am actively doing something about a situation over which I have absolutely no control. It also makes me feel like I can mentally prepare myself for something for which it is impossible to prepare.

So while I wait, I worry. It is difficult not to go over times when some of the worst or unlikeliest outcomes have happened. I had the “best kind” of cancer only it wouldn’t go away. Akasha’s prognosis was originally good. That Maceo would end up in the ER last night was thought highly unlikely.

I go through bouts of extreme optimism and pessimism when it comes to the results for both Maceo, and for me. I remember last year, while I waited for my scans to come back, I mentally pleaded for at least one more year of “normal,” but now I think I should have been more specific and asked for more time, as if I could have willed it so.

As for my pancreas, the doctor is reluctant to tell me anything until they know exactly what they’re dealing with. What the endoscopy did show was that my pancreas duct is “squiggly”—I was in a post-anesthesia haze when I talked to the doctor, but I’m pretty sure that’s the term she used. It is supposed to be fairly straight, and something is pushing on it, and so it seems that its squiggly shape is probably causing the enzyme backup and the pancreatitis. The thing that is probably causing the problem seems to be the pancreatic lesion—that spot on my PET scan that’s been lighting up for so long—so they took a biopsy to be safe.

Hopefully, the samples will show what this lesion is. There’s the possibility of a stent to open up the duct, and there’s also a possibility of surgery—and pancreatic surgery is intense. All of this, however, is a lot of what-ifs. In the meantime, I’m trying not to look up the possibilities.

Before Maceo’s health issues yesterday, I had been thinking a lot about waiting. I have spent a lot of time feeling as if my life has been on hold—first with the year and a half of cancer treatment, and now, as I wait for pancreas news. Yet, when I look back at the time waiting, I realize that my life kept moving forward during that time—a lot of good along with the bad. I often wait for things to be good and right and perfect. When those times happen, I try to appreciate them, even if it’s only for a second or two to make note of it.

Life is messy and rarely do things align so well—it’s hard to not let the nagging imperfections mar the good things. I am trying to accept that I will almost always be waiting for something—news, change, improvements—but not to let it obscure the good things of the present, like two kittens each playing with the opposite end of the same toy.

UPDATE 2:47 pm: Maceo is coming home today and is hydrated and eating. His ultrasound showed his IBS and a bit of pancreatitis with possible signs of small cell lymphoma. Poor kitty! Hopefully he can also manage his lymphoma and we can deal with our pancreatitis together.

Pancreatitis

At the end of 2015, a lot of people said, “Good riddance.” I am still unsure about 2015. I am both glad to see it go and apprehensive about what 2016 will hold.

I had a really great year, for the most part, until late September/early October. Within a week, one of my beloved cats died, my mom told me she needed hip replacement surgery and I got an acute pancreatitis attack. October was tough. November was better.

On December 2, I had another acute pancreatitis attack and I have been a wreck ever since. The first week afterward, I did nothing but beat myself up about it and agonize whether I’d caused the pancreatitis to come back somehow. Over Thanksgiving weekend, I’d had some fatty foods and a few drinks, but nothing too crazy. Still, I worried—and worry still—that the pancreatitis is my fault, that I triggered it somehow. The thought that I could have avoided this consumed me for at least a week.

The lymphoma wasn’t my fault, but this pancreatitis was different—even the slight chance that I could have avoided the pancreatitis somehow made me feel terrible. I felt like I finally got my hard-won health back and then, though my own fault, I lost it again. I had so much hope that the October attack was an isolated incident. I had felt a little weird the week leading up to the attack, but the doctor said I couldn’t have prevented it. I had an MRI a few weeks later, which showed the lesion—the mysterious spot that has shown up on all the PET scans. After the MRI, I waited a few weeks for an appointment with another gastroenterologist, who recommended an endoscopy, scheduled for next Friday. The time in between appointments has seemed like an eternity.

I haven’t been this depressed in years—even through the cancer. I’ve started to write posts, but I’ve been busy lately, so instead of a thoughtful post, this is just getting my thoughts out in hopes that it will help. It’s not all bad, of course. In fact, everything else is great. The twinges of pain in my pancreas aren’t even that bad—it’s my mind that is the worst part. I worry all the time. I worry that the doctors won’t be able to figure out what’s wrong. I worry that I will develop chronic pancreatitis and will always be in pain. I worry that all the hopes and plans I had while recovering from my stem cell transplant won’t happen after all. As the year ended, I worried that maybe most of the good in my life is done and things will only get worse.

I worry that I’m sinking into self-pity that I don’t deserve. It’s hard not to go to that place. After the chemo and the stem cell transplant, I wanted to be healthy again. Even though I still have some lasting effects—like the numbness in my hands when it’s cold or my tiny radiation tattoos—I wanted to go back to “normal.” I don’t want to go back to the world of doctors and biopsies and tests.

The other thing is through the cancer treatment, there was always an end point to look towards—even as that point kept getting farther away after the first six months of chemo didn’t take and after the three-month trial didn’t get me into remission. Yet there was always an end point, a light at the end of the tunnel. I feel like I’ve fallen back into a dark hole of unknown health issues and there’s no end point.

It’s not like I have only unknowns. I have had two pancreatitis attacks. I have a lesion on my pancreas. I have weird twinges of pain to my left side, lately to my right side and sometimes below my belly button. My lipase levels were high last Tuesday and they’re even higher (about double) as of yesterday’s blood test. I feel helpless and somehow responsible for this at the same time. I have been staying hydrated and have been trying to avoid fatty foods. I was told yesterday that I’ve lost two pounds in the past month, but I would trade that for all the holiday treats I had to pass up.

I want to go back to the time before my cat died and before I got sick again, and I want to stay there. Or I want to fast-forward to when things are OK again, if they can be. I don’t want to be anywhere near now. It feels like my life is on hold again, suspended. I have been trying to cheer myself up—working out, wearing some old clothes I found when I cleaned out the closet. I have things to look forward to, and I know looking back won’t do much good, unless it’s to learn something. Right now, I wait for my endoscopy and, hopefully, for answers, and to feel better. So far, with every appointment, there have just been more questions than answers.

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