Although I was in no way enthusiastic about my June 17 surgery, two things made the prospect bearable: the expectation of having all cancer removed from my body and the confidence of one of my surgeons that I would be recovered in time for my rock-climbing trip with First Descents in early September. Unfortunately, neither of these was to become reality.
I’d expected to spend the first night after surgery in the intensive care unit of the hospital. After several fuzzy and pain-filled hours in the recovery room, the nurses told me I was being moved to my room. A regular room, not in the ICU. I interpreted this as a very good sign at first; I was already doing better than expected! The first indication that not all had gone as planned was a bandage on my neck I found as I rode up the elevator in my hospital bed. Only a few days before, I’d had a conversation about tracheostomy tubes with my friend, a doctor. Panicked, I asked about the bandage, expecting to be told that it was covering a large hole in my throat. I was only slightly relieved to hear that the attempt to place an internal line in my jugular during the surgery had been unsuccessful – I still imagined the large hole. But the nurse assured me that it was nothing to worry about.
My mom was waiting for us upstairs. I asked her almost immediately if she’d spoken to the surgeons, and what all had been done (the surgeons had planned to cut me open and then decide how to proceed depending on what they saw). I found out then that they’d removed one section of my colon but little else. They’d seen a fair amount of cancer growth on and around my small intestine that they didn’t think could be removed, and had decided against proceeding with HIPEC (the “shake-and-bake” part, which would have involved washing my insides with heated chemotherapy). I was also surprised and confused that my mom mentioned only one part of my colon; the one thing we had known with certainty prior to the operation was that there were at least two cancerous lesions in my colon, in completely different places. “Well, that’s not very good news. Actually, that’s pretty terrible news,” I told her, my voice breaking. The nurse offered to leave us alone, but as far as I was concerned, the conversation was over, and I told her so. There wasn’t much else to hear.
Once the nurse got me settled in the room and left, I asked Mom whether she’d updated friends and family. She said she’d shared the news with several close family members, and had emailed a larger group to let people know that I was out of surgery and doing fine. Neither of us felt ready to share our disappointment with the multitudes of people who had been texting, calling, emailing, and posting on Facebook all day. As I would later write to a few friends, it was hard to find the words. I was used to sharing bad news – after all, I have metastatic cancer. But the bad news was supposed to come before the surgery, and bring with it the promise of good news once all cancer is removed. Not so this time.
The following morning, after speaking with my surgical team, I emailed some of my closest friends, using the subject line “It’s not good,” and briefly explained what had happened during surgery. Though I was aware, of course, that the longer people were without information regarding my health, the more they’d worry, I asked that no one share this information until I was ready. After all, most of my broader friend group had at least been notified the night before that I had made it through surgery ok. And I just wasn’t sure I was prepared for everyone’s responses, especially if they were going to make me feel even worse about the situation (my people are pretty good at being supportive instead of needy in response to my setbacks, but not everyone is familiar with Susan Silk and Barry Goldman’s awesome ring theory rule of “comfort IN, dump OUT”). It took me another day and a half to draft and send a more detailed message to the larger group. In the end, I believe I received a lot of supportive responses (I was on a large amount of Fentanyl, which made it difficult to focus my eyes and stay conscious while I read emails and texts).
I spent the next week in the hospital. Every day when my medical team visited, I was ready with a list of questions. I wanted to know what was happening, what my options were, and why the surgeons hadn’t been more aggressive. I learned that while HIPEC administers a very large dose of chemotherapy all at once, it penetrates only about one millimeter – and some of the tumors around the small intestine are closer to one centimeter in size. It could make me very weak, increasing my recovery time, and not provide any benefit. I also learned that one of the cancerous areas in and around my colon had not been touched due to its location – proximal to the bladder and uterus. Surgical intervention could have impacted both bowel and bladder function. I asked whether this area could be treated with radiation, which until now had not been an option for me, and though my surgeon recommended I discuss it with my oncologist, she thought it was likely.
When I left the hospital, I was able to get up by myself and take long walks through the hospital corridors, but I was still barely eating. Unfortunately, seven weeks later, less has changed than I would like. My incision at least has healed well, but I have not bounced back quickly as after previous surgeries. When I was weighed at my oncology appointment last week, I had not gained a single pound. Until just a few days ago, even one bite of food caused immediate abdominal pain, creating a significant barrier to ingesting anywhere close to the calories I’d need to get back into the triple digits.
All of this has caused me to feel fairly frustrated and disheartened. After three and a half years and three (now four) surgeries, I’m used to following pain with improvement. The trouble is, this time around, the surgery did not fix me. The source of the problem is still inside me.
It took me five weeks to recognize this key difference between my current situation and my previous experiences, to realize that this lack of progress is at least partially out of my control. I’d still like to feel better so that I can return to my normal life – but I know that it will take more than just time for that to happen. I began daily radiation treatments to my pelvis last week, which will continue through early September. Ideally, these will zap the wall of tumor that has formed in my “cul-de-sac” and has penetrated the colon wall. I’m also taking 2,000mg of Xeloda, an oral chemotherapy drug, daily, which I hope will keep the growth around the small intestine at bay until the radiation is over, at which point I’ll begin a more aggressive chemotherapy regimen. And finally, I’ve begun daily infusions of total parenteral nutrition (TPN), which both removes some of the pressure I’d felt to eat constantly (though I will continue to eat to the extent I am able) and will hopefully help me add some pounds. Onward and upward.
A few weeks ago, I went to Rochester, Minnesota to get a second opinion from the Mayo Clinic on the new cancerous growths recently found in my colon. I felt ambivalent about the trip; while I understand the importance of second opinions, I already had what I thought was a good plan with two surgeons I loved at Washington Hospital Center. These Mayo docs would have to really impress me to convince me to go all the way to Minnesota for surgery. Or what if they came up with a completely different diagnosis and/or plan? Would I have to then seek a third opinion for the tiebreak?
After sleeping only two hours the night before and getting up at 4:00 in the morning for a 6AM flight to Chicago, I spent most of the trip trying to catch a few winks, and didn’t pay much attention to my fellow travelers. As we filed into the tiny Rochester airport, however, I started to wonder how many of us were headed to Mayo. On the shuttle downtown, the driver told us that the Mayo Clinic sees more than one million unique patients each year and employs more than 30,000 people in Rochester. The second largest sector of the city’s economy is hospitality, with more than 5,000 hotel/motel rooms to serve patients and their families.
When we arrived downtown, it was easy to see that he wasn’t exaggerating. Rochester IS the Mayo Clinic (and the restaurants and hotels that surround and connect to the many medical buildings). I felt like Dorothy & co. arriving to the Emerald City of Oz to find solutions to all their problems.
After dropping my bags at the hotel, I made my way over to the Gonda building to check in, drop off medical records, pick up my itinerary, and have bloodwork done. It all went pretty smoothly – the service is impressively efficient, though the whole place exudes a somewhat industrial aura. I checked in at Desk G of floor 9E, then was sent to Desk C in the subway level of the Hilton building to wait to be called to Door Number Three for, according to Section A of my itinerary, Venipuncture Specimen Collection. (And I learned once I got there that if I wanted to have blood drawn through my port, I’d have to go to Desk L-A in the lobby level of the Charlton building.)
By this point, I’d decided this place resembled 1984 more closely than The Wizard of Oz. As I looked for a place to eat lunch (my itinerary gave me the rest of the day off), I thought, I do not like it here.
First of all, you could stay there for months without ever going outside. The Mayo buildings are interconnected – and linked to may of the surrounding hotels, restaurants, banks, etc – by a series of enclosed bridges and tunnels they call subways and skyways. And for those buildings that are not directly connected, such as my hotel two blocks away, there are usually free shuttle services. While I recognize the value of this system in a place that has below-freezing average low temperatures for almost half of the year, I think I’d rather avoid being there entirely than be stuck indoors for five months. Of course, the fact that I was visiting on a beautiful spring day made it all the more depressing to be sent underground when I asked for directions.
Second, you assume that everyone you see – unless they’re wearing Mayo Clinic badges – is sick in some way. In the hallways, elevators, waiting rooms, streets, we all look each other up and down, trying to gauge the severity of medical problems we encounter. Is this a perverted contest I’m trying to win by looking for people whose problems seem trivial? Or am I seeking relief, looking for someone, anyone, who looks worse off than I am? Since I was hobbling around in a boot, having sprained my foot the week before, I was sure that everyone sizing me up thought I was an easy fix.
But my opinion improved somewhat at my appointments the next day. I was strangely relieved to wait well over an hour – first in the waiting area, then (after being called to Door Number Two) in the exam room – before seeing the doctors. Finally, a sense of familiarity! And the oncologist and colorectal surgeon who reviewed my case were both fantastic. Best of all, they agreed that I’d be best off with the surgical team I’d chosen in DC. This was a huge relief to me, both because I was so ready to just have a concrete plan, and because I had no interest in spending my entire summer recovering from surgery in Rochester, MN.
Within the week, I’d spoken with the offices of both Washington Hospital Center surgeons, and scheduled the procedure for June 17. Four more days.
I am ready. I’ve been feeling less and less well over the past two weeks, and can’t wait to get this cancer out of me so that I can get started on my recovery. But first, I’ve got to finish packing up my house, go kayaking with local First Descents alums, go to a Willie Nelson/Allison Krauss concert, and move out of my house. Almost there.
I recently sent a health update via email to family members, and since I’ve always been a big proponent of recycling, I thought I’d post it here as well instead of writing a whole new post. Read on…
As usual, sorry to be sending a mass email with bad news, but I have spent so much time on the phone over the last week to doctors and my parents that I’m afraid any more cell phone exposure could give me a brain tumor! (Just a little cancer humor…)
I wanted to let you know that a recent colonoscopy found two new cancerous lesions. I’ve known for about six weeks that this was a possibility – my annual scope in early March found a suspicious area that showed “severe dysplasia” when biopsied. This was not good, but didn’t necessarily tell us much – it could have meant as little as inflammation or as much as cancer. I did a second scope a week later to get further biopsies, but these came back less suspicious, so the docs decided to wait a month and then repeat the test.
This time, it found definite cancer in two different parts of my colon, which my doctors think are two new colon cancer diagnoses, not metastases of my previous cancer. This is because the cancer appears to have originated in the colon, and neither growth is in the same area as my original colon tumor. Based on this finding, they are recommending that I have my entire colon removed. This is routinely done in patients with Lynch Syndrome, a hereditary condition that increases both risk of colon cancer and the likelihood of developing additional colon cancers, and often causes it to occur at an earlier age than usual. When I was first diagnosed in 2011, I did genetic testing for Lynch and other mutations and hereditary conditions, and all of it came back negative. But since we only know what about 5% of the genes do, only certain mutations can be tested for – so of course it would be possible that I’d have one that hasn’t been discovered yet.
Of course this is a bummer – I’ve been on chemo for the past three years of my life with the explicit aim of avoiding having to ever get just such news – but it’s a better outcome than the alternative (that these lesions are metastases of my previous cancer, growing into the colon from the abdominal cavity). This possibility can’t be ruled out until the surgeon gets his eyes on my insides to see what’s going on. And even if the new cancer is confirmed to be new primaries contained within the colon, that doesn’t mean there couldn’t still be other metastases from my previous cancer(s) (in addition to colon cancer, Georgetown diagnosed me with appendix cancer after my second surgery in 2012) lurking somewhere.
Because that possibility exists, one colon surgeon here in DC has recommended that we schedule another potential shake-and-bake (http://www.hipectreatment.com/about-the-hipec-procedure/) procedure with this surgery. That way, if they do see further spread when they open me up, they can zap it then. Surgical multitasking. I like this surgeon very much, but am going to the Mayo Clinic next week to get a second opinion before confirming anything. Whatever I decide, surgery will likely be mid-June.
Until then, my goal is to get as strong as possible, in terms of both weight and physical fitness, in hopes of speeding my post-surgical recovery. As you may know, I went on a weeklong climbing trip in Moab, Utah in May 2012 (just after learning of my cancer’s recurrence and metastasis) with an organization called FIRST DESCENTS that offers young adult cancer survivors a free outdoor adventure experience designed to empower them to climb, paddle and surf beyond their diagnosis, defy their cancer, reclaim their lives and connect with others doing the same. I had an amazing time and met 14 other awesome survivors who helped me prepare mentally for the major surgery that was waiting for me upon my return to Washington, DC.
I’m signed up for a second FD climbing expedition in September, this one to the Gunks in southern New York state – and I still have every intention of following through with it. While these trips are free to participants, they cost at least $1,000 per person to run – so to go on a second trip, FIRST DESCENTS asks us to pay it forward so that more young cancer survivors can rediscover their strength through this experience. We do this by fundraising through a physical challenge of our choosing. I am currently participating in a 5K training program for cancer survivors that is preparing us for a race in Washington, DC on June 14. It is likely my surgery will be before then – so I am pledging run a 5K before this surgery. I am also engaged in a weight-gain competition with another FD alum who shares my struggle with keeping the pounds on. You can read more about my challenge and donate here: http://tfd.firstdescents.org/goto/YingsOnTheRun.
When I called the FD office last week to let them know about my upcoming surgery and tell them my 5K plan, I was told that I didn’t have to worry about getting my challenge in beforehand. But running this race means a lot to me. It’s not a huge distance, but it’s one I’ve never run all at one time. I want to feel strong going into this operation. I want that perceived strength to help me through the recovery. And I want to do everything I can to make it on this trip in September – the idea of another surgery is much easier to accept with this trip to look forward to.
After I wrote this message, I fell going down the stairs and hurt my foot. My cousin took me to the ER on Wednesday, and after a couple of hours and four x-rays, the doctor told us that it was only a bad sprain. I see my orthopedist (yes, I have an orthopedist, since I broke this same foot just before my last surgery) on Monday, so I’ll find out then whether I have to postpone my 5K! I’m hoping not – it has already improved a great deal in less than 48 hours. But until then, I will try to follow the ER doc’s orders to stay in my trusty fracture boot as much as possible…
My mom loves to tell a story about a trip to the dentist when I was a very young child, maybe three years old. I had cavities in all of my molars and needed fillings. Before beginning to drill, I of course was given some sort of anesthesia that should have knocked me out, especially given how tiny I was. But I refused to fall asleep. My mom could hear my screams in the waiting room; a nurse emerged to assure her that although I remained inexplicably awake after receiving the maximum drug dosage, I was not in any pain. When the dentist finished, a nurse carried me – calmer, very drugged, but still awake – out to the reception area. While I introduced myself to anyone who’d listen, the nurse told my mom, “This child has a will of steel.” As soon as I was safely in Mom’s arms, I finally passed out.
For better or worse, I’ve always done things on my own terms. My determination and fierce sense of independence come from both sides of my family: Yinglings are always right, and Sandersons are never wrong – my dad has even argued with friends of mine over the pronunciation of their own names. And since we know everything, we don’t need help. Ever. This attitude went into overdrive after my diagnosis – No, I didn’t need company at routine clinic or chemotherapy appointments. Yes, I was fine. Sure, I could take the bus to chemo.
But cancer has worn me out, and I’ve managed to tone this down (a bit). When someone loaned me a car to get to treatments, I accepted (but then promptly broke my right foot and couldn’t drive…and when the foot finally healed and the car was once again offered, I decided to buy my own). After my last surgery, I agreed to let people bring me food twice a week. And when my friends admitted that they were scheming to sneak into my house and put together the huge new Ikea wardrobe I’d purchased that I was secretly planning to assemble on my own (which was a stupid and impossible idea), I let them in through the front door.
Still, while learning to accept help has made things easier for me in the years since my diagnosis, the will of steel remains, and has also served me well – anyone who has gone through any medical ordeal will tell you that it is imperative that you be your own advocate. For instance, when excruciating pain while swallowing precluded me from eating (and my doctors assumed reflux and wanted to give me an acid blocker and send me on my way), my insistence on an endoscopy found a 10-centimeter stretch of ugly ulcers in my esophagus, resulting in a several-day hospital stay.
And then sometimes, this will of mine gets me in over my head. I went to Zambia with my friend Casey for New Year’s, and after several days on a lovely safari with friends of his, they sent us off to Livingstone to see Victoria Falls. I’d largely ignored the pages dedicated in my guidebook to all the activities there for thrill-seekers, but as we packed for the flight from Lusaka, Casey, doing his research for the first time, decided that we should do a tandem bungee jump – and somehow talked me into it, saying that he’d never do it on his own, but that it wouldn’t be so bad if we jumped together. Heights don’t bother me, but I am terrified of edges. I have never wanted to bungee jump. Ever.
But I’d agreed, and that was that. When it was time, we walked over to the Victoria Falls Bridge that connects Zimbabwe and Zambia. We had to stop to register at an overlook on the Zambian side – while we waited, I was careful not to look out to the bridge or down to the gorge below. When it was our turn, the man told us that they did not offer tandem jumps anymore. Of course, our agreement was premised on the understanding that we could jump together. But now we were at the bridge, and neither of us was going to be the one who backed out. So I told the man we’d jump separately, and they weighed us, showed us where to sign, and took our money.
After taking a shot (of course there was a bar at the registration office/overlook), we walked out onto the bridge. Thankfully, there was no line, which meant no extra time to mull over this horrible decision. I asked to go first, fearing I’d back out if I had to watch Casey jump before me. The bungee technicians helped me down to the platform to wrap my shins in towels and put me in a body harness while I asked questions about everything they did. Finally, it was time. Since my feet were tied together, they told me to hop over to the edge (an instruction I ignored, instead using baby steps to get there). After a pep talk about how I was 100% safe and just had to focus on the horizon, I made it to the edge, they counted down, and I jumped. As expected, I hated it. But I blame my parents – this resolve is genetic.
Thirteen months ago today, my mom and I left the American Cancer Society Hope Lodge in Baltimore, Maryland at 4:30 in the morning to head to Saint Agnes Hospital to check in for HIPEC surgery. This was my second major surgery in just four months – my ovaries, appendix, and a few nodules in my omentum had been removed in June, but that surgeon left behind a few tiny spots he’d seen in my omentum, making me a candidate for this shake-and-bake procedure.
After an hour or so in a heated gown, a couple of blood type tests to check and double-check (in case I’d later need a transfusion), and a quick chat with my surgeon, my mom gave me a squeeze, the anesthesiologist knocked me out, and the nurses wheeled me off to the operating room. I woke up after the five-hour procedure to somewhat alarming news – the surgeon told me he’d found (and removed) more cancer than they’d expected: besides the omentum spots the previous surgeon had seen, there was a growth on my liver, another on my small intestine which had adhered to my abdomen wall and caused two kinks, and a tiny nodule in the peritoneum. The pathology results brought some relief a few days later, however; when biopsied, only the omentum and the peritoneal nodule tested positive for cancer. And if the surgeon’s suspicions were correct, that the other items he removed had been cancer at some point, then the negative biopsy results indicated that the chemotherapy had been doing its job. Whew.
I was anxious to recover enough to go home – with the exception of my surgeon, his nurse, and four lovely nurses on my floor, I was unimpressed by Saint Agnes Hospital. I was awake in excruciating pain most of the first night after surgery, waiting for promised pain meds that took hours to arrive. A few days later, a patient on my floor passed away, which my nurse told me in order to chide me for calling for my meds that were more than two hours late (in a tone that clearly said “oh poor you, you’re in pain – well this woman died“). And the constant construction noise – the floor above me was being remodeled – didn’t help anything. Before surgery, I’d been constantly warned to expect everything with HIPEC to take twice as long as previous surgeries – hospital stay, general recovery, return to work, etc. Of course, I’d mostly ignored those warnings, telling myself that they were for old people in poor health – and this was reinforced when I was discharged just a week after the procedure.
But the recovery was just beginning. I thought I’d automatically feel much better once I was home, but frequent pain and nausea made food unappealing. The hard mattress that I’d always loved was now bruising the scant 92 pounds that remained of my already-thin frame, keeping me awake at night. The weather outside was cold and rainy, so I had no motivation to take even short walks around the block to get some exercise (in the hospital I’d done countless laps around the ward). My house is large, but it’s vertical, and I wasn’t feeling strong enough to think that walking stairs any more than I already had to just to eat or get to the bathroom was something I wanted to do, especially with a broken foot. (Yes, that’s right – as you may recall, I had broken my foot in September and would have to wear an air cast until December.)
At my three-week follow-up appointment with my surgeon, my voice broke as I expressed my frustration at my slow recovery. I thought I’d feel better by now, I told him. He just smiled at me, and told me that I looked fantastic and that he was more than pleased with my progress to date.
After that appointment, I recalibrated my expectations. Recovery did not speed up – the first full meal I remember eating was Thanksgiving – but I tried to stem the frustration and accept each day as it came. I didn’t ask for yet another life lesson in all of this, but through the experience I did learn a lot about patience and how to take care of my body.
A full three months passed before my oncologist determined I was ready for a CT scan and to resume chemo. In late January, I started 5FU, Avastin, and Erbitux. Since then, I’ve had three scans – all clear – and trimmed the regimen down to two drugs.
It’s hard to believe that a year ago I was 15 pounds lighter, unable to lift more than about 5 pounds due to risk of hernia, and getting most of my nutrition through Ensure Clear. When I compare now self to then self, and realize I’ve had A YEAR OF CLEAR SCANS, I feel a bit like Hushpuppy from Beasts of the Southern Wild.
But today I’m tired. This week, I’m tired. Yes, I’m opting to continue poisoning myself – for just five more months, if scans stay clear – in an attempt to kill any cancer cells that may still be lurking. Some people think I’m crazy to continue treatment when my current results are so good. Here’s the thing – just two months after the last time I had a full year of clear scans, my cancer came back, and spread to my ovaries, abdomen, and appendix.
So while I’d love to celebrate, my mind begs caution. I’m not out of the woods – I’ll never be out of the woods.
But I’m in a much better place than I was a year ago.
Weight gain has been an ongoing struggle for me since my diagnosis. I’ve always been skinny, and my initial illness, surgery, and 11-day hospital stay in March 2011 caused me to drop about 15 pounds. Though the subsequent six months of FOLFOX chemotherapy didn’t make me too sick, it did affect my appetite; after the end of treatment in late 2011, I plateaued around 107. I was overjoyed, then, when I suddenly started gaining a couple of months later – in less than three months, I was near 115, more than I’d ever weighed in my life. I felt happy and healthy, had started playing ultimate frisbee again after an eight-year hiatus, and was in remission and confident I had conquered cancer.
My sense of reality crashed in May, however, when I discovered that the rapid weight gain had been not due to health, but rather to my traitor ovaries which had turned into softball-sized monsters inside of me. Surgery to remove them in June took me back under 100. By October 16, when I had the shake-and-bake surgery, I was up to 104 – though the doctors had hoped I’d do a better job of fattening up before the procedure. I begged for TPN (intravenous food they’d given me during my very first hospital stay, which I told visitors was breast milk) in the hospital, but while my oncologist agreed, my surgeon refused. It was at least a month after the procedure before I ate – and kept down – a full meal, and my weight went down to 90.
And until a few months ago, I’d been stuck in the 90s ever since, fighting to break my way back into the triple digits because, as my cousin kindly pointed out, “the 90s haven’t been cool in like 20 years.” So I was overjoyed when, on May 5th of this year, the two-year anniversary of my first chemotherapy treatment, I tipped the scales at 101.6 pounds.
But as I prepared to report my success, new roadblocks emerged. Just a few days after registering in the triple digits for the first time in over six months, excruciating pain in my throat, chest, and back that was most acute when I swallowed made me put eating on hiatus. I called my GI doctor to ask for an endoscopy; his nurse told me it was likely reflux and called a prescription antacid into my pharmacy. I was not convinced, and knew that my new pounds would fall off immediately if I did not start eating again soon. Luckily, my oncologist and infusion nurses know me well. One look at me when I arrived for chemo infusion was all it took for a nurse to realize that something was seriously wrong. Instead of chemo, I was given intravenous painkillers and sent to the emergency room. I ended up in the hospital for most of that week, but finally got the endoscopy, which found a carpet of ulcers covering a 10-centimeter stretch of my esophagus. This diagnosis required a two-week diet of liquid dilaudid, viscous lidocaine, and as many calories as I could get through other liquids that made it extremely difficult to maintain – much less gain – weight.
Once I got rid of the ulcers, however, things have gone a bit more smoothly. Although biweekly chemo still reduces my appetite and makes food less appealing by altering my taste buds, I am determined to continue the upward trend. I’m still under my pre-cancer weight, but have gained a few more pounds (which hopefully my next CT scan on October 4 will confirm is thanks to fatty, proteiny Greek yogurt, and not to cancer cells taking over my organs and multiplying at an exponential rate). I’d post photo evidence of my new, heavier self, but I’m afraid you wouldn’t be able to tell the difference.
I was hoping for a Gillian Anderson-like transition out of the 90s (for those unfamiliar with her progress, she metamorphosed from Agent Scully into a woman), but I’ll take what I can get. Onward and upward!
“I think we should stop the Erbitux.”
These words, spoken by my oncologist just a few short hours ago, ought to have been music to my ears. Erbitux is one of three colon cancer therapy drugs I’ve been on since late January, and the only one that causes substantial side effects for me: extreme sun sensitivity, apparently not alleviated by sunscreen, that causes my skin to peel and flake even after minimal exposure; low magnesium levels, which often means an extra hour in the chemo chair for a magnesium infusion; skin rashes and extreme dryness that can be painful and itchy; tiny cuts/cracks on my fingertips that are generally tolerable but made my last crawfish boil an agony; long, fast-growing eyelashes that at first I welcomed, except that they’re wiry, grow to the very corners of my eyelids, and often point in the wrong direction, so way too many of them end up IN my eyes; and the list goes on. It’s also the only drug of the three that I have to have infused weekly, instead of biweekly, since a stronger dose that could be given every two weeks gives me a three-day migraine.
So I do not love Erbitux, and one part of me is excited to cut down on my trips to the hospital for infusion, significantly reduce the hours spent in the chemo chair, and reclaim my summer and the sun it promises.
This decision should make me happy – the problem is that it feels premature. After my last scan (on April 18) came back clear, my oncologist said that we’d scan again in July – and if that one were clear, we’d decide which drug to eliminate from the mix. I was content with that plan; a slow, cautious reduction in treatment, based on evidence that it was no longer needed or could be cut back. But we were forced into today’s decision by a 10-centimeter stretch of esophageal ulcers, nasty things that kept me from eating and put me in the hospital for four days a couple of weeks ago. The suspected cause is doxycycline, an antibiotic that I’ve taken twice daily since January to save my skin from Erbitux.
So I’m in a bind. Obviously, I need to eat. Three days of minimal nourishment plus nine days on a liquid diet isn’t good for my weight gain goals. But they don’t want to give me more doxycycline, and I can’t imagine tolerating the Erbitux without it.
Such is the dance between fear and joy for a cancer patient. We count the days of treatment, hoping for an end or at least a break – and when it arrives, we’re afraid it’s too soon. As bad as the side effects might be (and mine could be much worse, but they’re still undesirable and inconvenient), we often prefer them to what we fear is the alternative – a recurrence.
And it’s hard because there’s no right answer. Cancer is not black and white. Each person, each diagnosis, each experience is different. So we do what we can to be comfortable with the decisions made regarding our care.
I next see my oncologist on Monday. I know it will be a long appointment; I’ll do a lot of reading and researching over the next five days, and arrive armed with a notebook and a list of questions. And I will leave as confident as possible in how we decide to proceed.