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

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.