Obstruction

The fun just won’t seem to stop over here in my little war against colon cancer – and if you haven’t figure it out already, I’m being sarcastic when I say “fun”. If you’re not connected with me on Facebook, then you wouldn’t have heard about all the excitement. After a rather uneventful infusion day last Monday (the first round of a regimen called Folfiri), my stomach started cramping the next day. Cramping, together with diarrhea, is a common side effect of Folfiri, so I waited for it to abate over the next couple days as the chemo worked its way through my system – but it didn’t abate. Instead, it got worse. I dug into my stash of narcotic painkillers left over from the HIPEC surgery; they barely made a dent in the pain. I couldn’t sleep Thursday night, asked a neighbor to take Mia to school on Friday morning as I rolled around in pain and suggested to Josh that it might be a good idea for him to work from home that day just in case. My colon cancer friends had told me about Lomotil and other drugs to help with the cramping while on Folfiri but I’d held off on asking for a prescription, hoping that the pain would subside on its own and perhaps suspecting in some intuitive part of me that my pain, as severe as it was, was not normal and would not be addressed by a simple drug. I’ve known agonizing gut pain before (excluding childbirth which belongs in its own category of agonizing pain), when I had a gigantic tumor completely obstructing my colon and when my colon was about to rupture and spread cancer throughout my body; the pain that I was now feeling wasn’t all that different from then – spasmodic cramping accompanied by lots of belching and occasional nausea and attempts at vomiting. So, I’ve learned to take pain, especially that kind of pain, very seriously. I called my oncologist’s office first thing Friday morning.

Dr. A.C. and his nurse practitioner sent me to the 2nd floor for x-rays and when the x-rays showed a potential small bowel obstruction, a CT scan. It took two nurses three attempts digging around my arms with a needle to get an IV in place, an IV through which the technicians would be able to inject the contrast for the CT scan; I hadn’t consumed water in over 18 hours, which made my veins small and difficult to stick. Suspecting that there would be more to come and I certainly did not want to be tormented again that day with more needle sticks, I ordered them not to remove the IV just in case I needed it later. It remained in place for the next four days.

I marched back up to the 8th floor to go over the CT scan results with Dr. A.C. Fortunately, shortly after arriving at the cancer center and making a failed attempt at vomiting, the pain had eased and I was feeling more sane, albeit very sleep deprived. I was ready to hear whatever Dr. A.C. had to tell me.

Before I continue, I must tell you about Dr. A.C. When I was reeling from the news of my diagnosis last July, lying in a bed at UCLA in Los Angeles waiting for my hemicolectomy, I told my internist, Dr. N.L. (a professor of emergency medicine at NYU) over the phone, that when I was ready to start chemotherapy and given that I lived in New York City, I wanted and expected the best medical care in the world and that I would look to him to find me the oncologist who would bring me that kind of care. Dr. N.L. sent me to Dr. A.C. At first, Dr. A.C. wouldn’t even take me because he was so busy, Dr. N.L. told Josh, but Dr. N.L. had persuaded him to change his mind. Josh and I did our research and saw that Dr. A.C. is most known for treating lung cancer, and when we pointed this out to Dr. N.L., he informed us that Dr. A.C. was an expert in solid tumors. Fine, Josh and I decided to trust Dr. N.L., who we believe to be an exceptional internist.

Dr. A.C. is in his mid-50s with a round shiny head and a generous salt and pepper mustache. I’m guessing he must be Jewish based on his name, but he was born in Egypt and raised in Australia, so he speaks with one of those accents of undeterminable origin. He’s not the warm and fuzzy type. I’m not either. So that’s fine. I just need him to be good at what he does. As I’ve discovered, to be a good oncologist means not just being intelligent (which is a given if the oncologist works at a prominent institution such as NYU) but also to have a streak of humanity that has withstood the constant onslaught of death and disappointment that cancer brings to any oncologist’s world, because that is the kind of tested and fortified humanity that will inspire him to fight for your life. Over the last nine months and last Friday in particular, I’ve seen that humanity in Dr. A.C., not in some grandiose acts but in little yet resounding gestures.

The first time I met Dr. A.C. was in his office at the NYU Cancer Center in early August of last year. He literally had hundreds of elephant figurines perched on his desk, shelves, window sills and every other inch of available space in various colors, shapes and sizes, all of them facing the same direction. “Wow, you must really like elephants,” I remarked in an attempt to break the ice, as I sat anxiously across from him. “Years ago, a patient gave me an elephant figurine and told me that if I positioned it with its trunk towards the door, it would bring luck. Ever since then, patients have been giving me elephants. I have thousands and even more stored in boxes,” he told me. We went on to talk about the details of my treatment plan, but the story of the elephants has never left me. It seemed somehow incredibly poignant that this brusque top oncologist at NYU would be the recipient of thousands of gestures of gratitude and hope as symbolized by the elephants and even more poignant that he would bother to crowd his office with so many of them. An undeniable testament to his humanity, I decided.

Then, a few months later, as he walked in to see me in one of his exam rooms, he was clearly speaking to one of his patients, Evelyn, on his cell phone. Evelyn was apparently demanding that Dr. A.C. make a home visit – do doctors even do that anymore? “Evelyn, I will try to see you this evening but it would be best if you could come into the office…Fine, I have commitments this evening, but I will do my best,” he told her patiently. He held his cell phone away from his ear, grinned and rolled his eyes at me. Even from where I was sitting I could hear Evelyn’s strident voice continuing to make her case. When Dr. A.C. was tired of her yelling, he put the phone back to his ear, very politely reiterated his commitment to at least try and then said good bye. How difficult it must be to be an oncologist delivering at once sympathy and compassion in the face of a life threatening disease while maintaining an appropriate distance and sense of humor for the sake of one’s own sanity, I wondered. Another testament to his humanity, I noted.

Last Friday I once again sat in one of his exam rooms. It was mid-afternoon, quiet by then. I was one of his last patients for the day as he and everyone else geared up for the weekend and all the people who were to receive treatment that day had already come through. He pulled up my CT scan images on the computer, undecipherable images in various shades of black and white that meant nothing to me.

With his back to me and as he continued to study the images, he called the radiologist whose name was apparently Hersh and asked, “Hersh, so is there an obstruction?”

Silence as Hersh pulled up my images on his end and said whatever he said.

Dr. A.C. hung up the phone, turned around to face me and declared:

Fuck!

Most definitely another testament to his humanity.

I wasn’t sure whether to laugh at and be touched by the fact that a doctor had said “Fuck” to me in response to not such good news about my medical condition or to cry at the fact that a doctor had said “Fuck” to me in response to not such good news about my medical condition. I did both.

The scans confirmed that I had a small bowel obstruction. Bowel obstructions are a common post-surgical complication. The bowels and small bowels (or more familiarly known as intestines) in particular are sensitive organs that can twist and kink after surgery because of adhesions (i.e., scar tissue) that form after surgery. Although my bowels were not cut during HIPEC surgery, the very fact that they had been exposed to air and the heated chemotherapy for 2 hours greatly disturbed them, throwing them first into a state of shocked dormancy from which they took two days to awaken after surgery (thus the obsession after surgery with passing gas and bowel movements) and then for weeks of resettling and finding their proper place in my body again. The latter process was apparently interrupted by adhesions around which the small bowels probably got snagged, creating a blockage that caused the abdominal cramping and nausea. Of course, the timing of the obstruction happening right after the first round of Folfiri also makes us suspect that chemo probably had something to do with slowing down the digestive process and therefore aggravating an obstruction that was probably already there.

Of course, when you have colon cancer, you think every obstruction is a tumor. So of course I had to ask Dr. A.C. whether it was a tumor. He said, no. No because someone had just been inside and seen my small bowls, he said. What if it were growing from the inside and therefore would have been invisible from the outside? I probed. If that were the case, I would be presenting you and your case in Stockholm, was Dr. A.C.’s response. I’ve never had a particular desire to go to Stockholm.

Dr. A.C. alerted Dr. D.L., my HIPEC surgeon. I was to go to the ER at Mount Sinai Hospital where I had received my HIPEC surgery and where I would be under the care of Dr. D.L. I was to bring my scans and the ER would then admit me to the hospital so that I could have complete bowel rest while receiving IV fluids in order for my bowels to have an opportunity to clear the obstruction on their own without the stress of having to work to process any food. What if the obstruction didn’t resolve on its own, I wanted to know of Dr. A.C. I already knew the answer would be further surgery. The thought of another surgery terrified me, not just because of the obvious fears, but also the implications it would have for delaying further chemo and the potential ramifications that delay would have for my prognosis. I broke down then, crying to the nurse practitioner and then to Josh. I felt like this was a disaster, yet another complication on top of all the other crap I’d already had to deal with. Josh told me this was a minor complication but I wasn’t convinced and thought he was just putting on an act. Dr. A.C. wasn’t all that reassuring either. After all, his instant reaction to the news had been “Fuck!”. To be fair however I don’t think Dr. A.C. is used to dealing with post-surgical bowel obstructions and having them flare up as a result of chemo. He would know nothing about how often they clear up with simple bowel rest and the factors that might increase or decrease the likelihood of that occurrence. Then, there was the stress of who was going to take care of my daughters while I was in the hospital indefinitely because who knew when or even if the bowel obstruction would resolve. I had to work out all of those logistics as well. (Fortunately, my sister, nanny, neighbors and friends all stepped in to lend a helping hand with childcare, and to them, I am so incredibly grateful.)

Josh and I made our way up to Mount Sinai (with my IV wrapped up – it’s a good thing for the sake of NYU’s liability risk profile I’m not some drug-seeking heroin or meth addict or whatever drug it is that you shoot into your veins). I was seen fairly quickly and received a bed in the ER within a couple hours. I was told by the surgical residents (because no real doctors actually work on the weekends unless it’s a real emergency) that I would be admitted as soon as a bed upstairs was available. It also appeared based on the scans that I had a partial bowel obstruction. That and the fact that I wasn’t in pain and vomiting, didn’t have a fever, had an un-elevated white blood count and didn’t need a tube stuck down my throat to suck food out seemed to make them very optimistic that I could leave very soon. With the memory of the pain still fresh in my mind, I was not so optimistic.

I was entertained by the dramas of the ER for the first 18 hours. Honestly, I didn’t even mind sleeping there Friday night. I’m a nosy person so I enjoyed eavesdropping on all the goings-on, all within ten feet of me. First there was the young Asian girl with a stutter that had gotten markedly worse after a fainting episode; an MRI confirmed that she hadn’t experienced a stroke and she was sent home on the theory that it had just been a migraine attack and with orders to follow up with a neurologist. Then there was the middle-aged woman from Kazakhstan who’d been experiencing a fever for 2 months – who lets a fever go unaddressed for 2 months? — it was determined that she had some kind of kidney infection and she was admitted for further testing. Then, there was the elderly woman who came in with a nasty cough and was reprimanded by the doctors for taking someone else’s antibiotics – some people are so stupid! Then there was the Spanish speaking woman who came in after a fall and what appeared to be some bruised or broken ribs and shoulders and the fresh-faced doctors who tried valiantly to communicate with her in her native language, speaking a terribly accented Spanish that they had cultivated some long-ago summer in Spain or Mexico – “Donde tiene dolor?”—hysterical! I was woken suddenly after midnight by shouts of “Get Security!” as nurses and doctors rushed by into the hallway where someone had had a bad reaction to some drugs and needed to be restrained. Of course, having just been jerked awake, I thought I was about to witness the ER handle a gunshot wound just like on TV or maybe worse someone had entered the hospital with a gun, in which case I’d better haul my ass under my bed and hide! Eventually, I fell back asleep under the bright lights that are never turned off, only to be awoken before 7 a.m. by a woman screaming in pain as she was rolled into the ER by the EMT; a nurse scolded the EMT, “I told you not to bring the crazies here and definitely not this early!”

But by 4 p.m. Saturday after 24 hours in the ER waiting for a bed upstairs, I was at my wits’ end, crying and ready to pull my hair out, no longer interested in knowing about other people’s issues. I certainly did not want to lie next to the 77-year-old man who was experiencing pain at the tip of his penis whenever he peed and I certainly did not want to hear his moans of pain as he peed or his complaints about how his pee was leaking out of whatever was being used to hold his pee and details about the medical procedure he would have the next day to have two bags place on the sides of his body. I had my own issues to deal with. I and Josh kept asking when my room would be available but nothing ever seemed to happen. Meanwhile, my pain had returned with a vengeance. That morning the surgical resident had instructed me to try some clear liquids (i.e., broth, jello, juice, water). My minimal attempt at clear liquids at 1 p.m. resulted in savage cramping beginning at 4 p.m. that grew so bad that I was demanding pain meds by 6 p.m. The first injection of 2 milligrams of morphine did nothing. I asked for more when I could finally find my nurse. Another 2 milligrams did the trick but then it brought on a sudden and urgent need to vomit. I searched frantically for my nurse, yelling to anyone who would listen, “I’m going to throw up!” A woman attending to her sick relative ran to get me a basin into which I threw up what little water I had consumed in the last hour.

There’s something extraordinarily depressing about seeing the same staff people 24 hours after they’d finished their prior 12-hour shift and hearing the inevitable, “You’re still here?” in that pitying tone. The pity from others, the pain, the constant sensory onslaught of the ER, the trauma of the last nine months, the knowledge that everyone I knew was out enjoying the beautiful weekend weather with their families as I lay pathetically in the hospital, it became too much and I went to a very dark place that evening, the darkest place I’ve ever known, a place of loneliness, desolation, despair, sadness, agony, futility, rage, jealousy, heartache and bitterness. Josh had left to go home and take care of the girls. I called my best friend and bawled my eyes out. It was as I was finishing my conversation with her that my sister showed up and I told her how I didn’t want to fight anymore, that I was done, that it was all so utterly useless. She yelled at me and told me to snap out of it. We called my brother and he told me to yell and scream and cry and let it all out and then to pull myself together.

Many have described me as strong and for all of my life, I too would have described myself as strong; I have always prided myself on an inner toughness, courage and tenacity that have allowed me to overcome legal blindness to achieve academic, professional and personal success and to travel the far reaches of the Earth. But never have I felt so spiritually weak, defeated and destroyed lying in that hospital bed, not even last July when I was first diagnosed with cancer. It was devastating for me to witness and acknowledge the limits of my toughness, courage and tenacity last Saturday and the trauma of that day still haunts me now as I seek to rediscover a fragile physical and emotional strength that might again crumble like a house of cards at the next obstruction or whatever else lies in wait for me in this relentless war against cancer. This fundamental belief and confidence I’ve always had in my own ability to handle my problems, to rise above adversity, have been shaken to the core, and I’m still trying to figure out how or even if I will ever be able to rebuild that faith in myself.

I was finally moved to a semiprivate room at 10 p.m. Saturday evening after 30 hours in the ER, where I rejoiced in the quiet. The nurse administered IV fluids with some actual nutrients (as opposed to the saline that the ER administered), gave me some Colace to help with moving things through my bowels and a shot of Heparin to prevent clotting and allowed me to sleep. Except for an incident with my roommate that night (she tried to have her spouse stay overnight against hospital policy and when the TV was still on past midnight and his clicking on his laptop was preventing me from sleeping, I asked the nursing staff to kick him out – she retaliated by keeping her TV on 24/7, keeping her light on all night and having loud phone conversations after 1 a.m.), my time in the hospital (after leaving the ER) was relatively restful, even if I felt a bit weak from time to time from the lack of food. I had one day of complete bowel rest without any food whatsoever and then one day of clear liquids. Despite the slight cramping brought on by the clear liquids, the doctors insisted that I try soft foods on Tuesday morning as a way to test my bowels; they were optimistic since I had begun passing gas a couple days earlier, as the ability to pass gas is a sure sign of functioning bowels. I hadn’t eaten since Thursday evening. I never knew an English muffin could taste so good or that a mushy hospital egg scramble could taste almost gourmet. To my surprise, I tolerated breakfast and lunch fine and was discharged Tuesday evening.

Dr. D.L. and his associates assured me in the hospital that bowel obstructions are very common post-surgical complications, that usually they resolve simply through bowel rest. When I heard that, I told the doctor, “Well, you have to understand, usually doesn’t give me much comfort anymore, because usually a 37-year-old woman doesn’t have colon cancer.” I can be such a bitch sometimes. If complete bowel obstructions are left untreated, they can result in bowel death, necessitating surgical intervention to remove the dead piece of bowel. But surgery is not warranted where there is only partial bowel obstruction, which is what I had (or have still); people indeed live with partial bowel obstructions, which sometimes requires a change of eating habits. Dr. D.L. is confident that my bowels will settle down and whatever partial obstruction is there will resolve in time since they were not resected during HIPEC surgery. Other than the scans I received on Friday, I didn’t receive any more scans. While imaging is used to diagnose an obstruction, it is not typically used to confirm the resolution of the obstruction; rather, the ability to eat normally is used as a sign of resolution; further imaging would mean additional radiation and the risks of additional radiation exposure would not justify the receipt of a mere confirmation of properly functioning bowels. Further imaging is typically called for when the obstruction appears to be worsening. Anyhow, Dr. D.L. feels I can proceed with chemo although he and Dr. A.C. will discuss as to whether it will be next Monday consistent with my original schedule or whether I should have an extra week of rest. He assures me that one week delay will not make a material difference.

So, you see, the fun just never seems to stop around here…

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2 Comments (+add yours?)

  1. Jeanine
    May 01, 2014 @ 20:38:37

    I am so sorry you are going through all of this. Hopefully, the obstruction will clear itself. You describe your hospital stay as being worse than when your cancer was diagnosed. I can’t even fathom that. The conditions in the ER and not being able to eat, I can understand you feeling as you did. Even so, your humor still shines through. You truly are amazing, Julie. Keeping you in my prayers.

    Reply

  2. poorab
    May 19, 2014 @ 01:44:06

    Catching up, perpetually catching up. Your ER story made me want to laugh cry shout scream, and a little bit of everything in between. I’ve spent much more time ‘on the other side’ but I have had my episodes as a patient in the ED for myself or family members. As usual you describe it so well – from the side that I don’t know as well – injecting your wit and despair and the absurdity of it all to make your point so much better than I could (ie – it totally sucks to be a boarder in the ED for 24+ hours).

    I’m glad you got through this without an NG tube, and that the food tasted good, the best sign of all, IMHO.

    Looking forward to seeing you in a few short months. Keep your spirits strong. The road is getting firmer and the path clearer…

    Reply

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