60 Percent

Whenever I’m feeling better, I don’t have as much time to blog. Work and freelance projects need to be completed, my garden plot needs attention, workouts are booked—and, of course, there’s fun to be had. Whenever I feel overwhelmed, I think of the alternative that I’ve experienced while being sick—not being able to work, having to stay away from soil and gardening, not having the energy to do fun things. I’ve been so busy, I never gave an update on my prognosis going forward.

Basically, there’s a 60 percent chance that this cancer will come back within the next five years. When it does, it will probably come back in several spots in my liver. It’s too hard to get out at that point, so then I’ll just have cancer, and they treat it like a chronic disease with medication. It will buy me decades, they say. Since 60 percent is kind of in the middle, it’s not enough to give me preventative drugs and have me deal with the unpleasant side effects.

Steve Jobs’ experience with pancreatic cancer makes a little bit more sense now to me. He also had a neuroendocrine tumor and had a Whipple procedure. He eventually died after a liver transplant, so I assume that if the tumors came back to his liver, he opted for a liver transplant. (Since I’m not a billionaire or Frank Underwood, I don’t think this option is open to me, and I’m not sure if it’s the best option anyway.)

I haven’t thought about it much, because I haven’t wanted to. I wasn’t worried about the first scan, because it was so close to the surgery. Now that my second scan is coming up on Friday, I’m very worried. I want more time of being “normal.”

On Sunday, I was at the community garden, weeding the brick path, when I disturbed an ant hill. I brushed off the ants, but one got stuck in the worn fabric of my gardening gloves. It looked like its head was stuck in the threads and it frantically tried to free itself. I tried to help the ant, and for a while, I wondered if it was more merciful to crush it instead of possibly crushing a leg or antenna. I felt guilty: If only I hadn’t come to the garden that day, the ant wouldn’t be dying. After several minutes of both of us working together, however, the ant was free, and I was so relieved.

So yeah, I’m in a weird place emotionally.

For me, the question of the cancer coming back is not “if,” but “when.” People tell me to think positively and to focus on the 40 percent, but I’m a pessimist and I believe in trying to prepare for the worst even as I secretly hope for the best. The odds haven’t exactly been in my favor in the past. I was supposed to have six months of chemo for Hodgkin’s lymphoma, which didn’t go away, so I had a stem cell transplant. Having a neuroendocrine tumor is rare, and having two types of cancer is pretty rare too. (Our late kitten’s condition of FIP was also relatively rare.) I keep expecting a rare good event to balance things out. I’m genuinely surprised when I don’t win the lottery.

Instead of winning the lottery, I would settle for not having the cancer come back. Definitely. You don’t get to bargain, but that doesn’t stop me from trying, and hoping, even as I try to steel myself for the worst.

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.

crocusBy 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.

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.

Aww...

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.