Awareness

Today marks one year since I was officially admitted to the hospital for a “large bowel obstruction.” (I spent all day on March 7 in the ER, but it was after midnight by the time they found me a bed.)

On this day one year ago, I had my first colonoscopy.

On this day, the blockage the doctors had first seen in the CT scan they’d done in the ER the day before, the reason for which I’d been admitted, officially became a tumor.

I didn’t receive the definitive diagnosis until a week later – but on this day, one year ago, I became aware of Colon Cancer.

Group home

I’ve spent the last week looking for a new person to fill the fourth bedroom in my house – my group house. When I first moved to DC two years ago, this terminology confused me. While shopping at the farmers’ market with my aunt, we ran into a friend of hers who was full of advice. Oh, you’ll definitely want to live in a group house, she told me. This brought to mind some sort of sorority-style living situation, with a house mom who does the cooking, cleaning and wash. Not for me, I thought.

But when I started my housing search on craigslist, I f0und that in DC, group house was a common term for a house shared by several people. I still thought it was a little odd, but I adopted the term pretty quickly – after all, it’s easier to say I live in a group house than to explain that I share a rental house with several other people. And since the term is so widely used, everyone understands it and knows exactly what you’re talking about. Or so I thought.

When I was in the hospital last March, one of my nurses asked me at one point whether I lived alone. No, I told her, I live in a group house. She didn’t say much in response, and I didn’t have any idea I’d been misunderstood.

A few days later, an occupational therapist came to see me. In case anyone isn’t familiar with the purpose of occupational therapy, according to the Mayo Clinic, it “gives people the “skills for the job of living” that are needed for independent and satisfying lives.” After a short evaluation, the guy told me that I didn’t need him and didn’t know why he’d been called for my case. Again, I didn’t think much about it – by that point, I’d seen and answered questions for so many different people, I just assumed I was getting the regular treatment.

It wasn’t until a few days later when I was talking about my roommates to one of the more chatty nurses that we realized the misunderstanding. The day I had reported to live in a group house, my nurse showed up to the seven o’clock floor-wide report-out with alarming news. Patient 12A lives in a group home! (In case you don’t fully appreciate the distinction between the word choice in this instance (house vs. home), allow me to share an excerpt from the Wikipedia entry on group homes: “homes designed for those in need of social assistance, and who are usually deemed incapable of living alone or without proper supervision.”)

Apparently, the next several minutes of the meeting were spent worrying about what to do with me when it was time for me to be discharged. Where would they send me? Would this place still have a spot for me when I was released from the hospital? Would I receive the necessary care/supervision there to fully and safely recover from surgery? Hence the occupational therapist.

I was horrified when we discovered the mix-up. What did they think I was in for? But we all had a good laugh about it, and I’m sure the hospital floor staff was enormously relieved to find that my case was much less complicated than they’d thought.

Still, in seeking a new housemate, I decided to be a little more careful in the wording of the ad I placed on craigslist.

This is personal.

I pass this poster on the way to work nearly every day. I’m not sure when it went up; I definitely didn’t notice it until after I was already home from the hospital last March. But I think we can all agree that yes, this IS personal.

For more info on this campaign, see the CDC Screen for Life page.

Take II

Last Wednesday I went for my regularly scheduled appointment and treatment and, after having my blood drawn and waiting a few hours, got sent home due to a low platelet count and told to return in a week. Future treatments would be two weeks from the make-up date. After my initial concerns – Did this mean I was more susceptible to illness? Should I not go to work or use the metro or go to the grocery store? What about my summer plans, since my chemo and off-weeks were now reversed? – I decided I was just as glad to have an extra week to relax. My nurse told me that self-quarantine was not necessary (just don’t play football, she said), though my bosses told me to work from home anyway. Why risk it? What if I slipped and fell in the hallway? (Yes, since my family is far away in Arkansas, my office is full of surrogate helicopter parents.) And as far as my vacation plans go, although this meant missing a long-planned camping trip with friends this weekend, with only a few tweaks I’ll still get to spend some time with my sisters, brother-in-law, nephew, aunt, uncle, cousins, and other extended family at Virginia and Delaware beaches in August.

My fiancé arrived the same day as my no-go chemo session, and we celebrated his arrival and birthday with a quiet weekend full of country roads, small towns, comfort foods, and local wineries in rural Virginia.

Yesterday I went in to the hospital for Take II, also the halfway point in my six-month, 12-treatment chemotherapy regimen. As much as I ended up enjoying having an extra week off, I was hoping my platelets had regrouped and were ready for round six. The less the length of this whole ordeal is extended, the better. David met me there to keep me company – his first chemo experience, since he’s been in Spain since it started.

My counts were good to go, and the pharmacy was fairly quick in getting my pre-meds, the oxaliplatin and leucovorin, and the 5-FU push up to me. However…the external pharmacy that brings the 5-FU for my pump had overlooked the order. Luckily, the nurse noticed this before the pharmacy closed, and arranged for it to be dropped off at my house. The nurse who usually comes to disconnect the pump at the end of the 46 hours would come to connect me.  Not the end of the world, of course, but less than ideal, since we weren’t planning to go straight home from the hospital, but rather go to a friend’s birthday dinner. But plans change, and my friend understood. And luckily, the nurse arrived to my house just as we did, the 5-FU had already arrived, and we were able to make dinner. Better late than never!

I suppose I’d better get used to these little bumps in the road. But at the same time, I wish these other people involved in the process would just all do their parts, to help me maintain as close to a normal life as possible while this is all going on. My nurse encourages me to be a squeaky wheel. I guess that sometimes entails calling ahead before scheduled treatments, and making sure everyone is on track.

Leave of absence

It’s been almost a month since I last posted; keeping up a blog requires dedication. Here’s what I’ve been up to since June 16:

• I’ve been to the hospital and back a few times. Mostly just for my regularly scheduled chemo, but once in hysterics, when I thought the needle had come unplugged from my mediport and that the chemo was leaking into my body. But that story warrants its own post.
• I had my hair cut very short. I had been planning to do this for a long time, but wasn’t sure it was a good idea with the chemo. Even though I won’t lose all my hair, with the thinning I thought maybe I should keep what I had. When I asked the doctor, though, she thought it was a good idea for my mental health. Dealing with hair loss is easier if you don’t see long hairs all over the bathroom sink and floor. So pixie it is!
• Operation Fatten Rachel Up was launched at work. Every morning when I go into the office, there’s a glazed donut waiting for me next to my keyboard. I’ve also enjoyed my boss’s mother’s neighbor’s peanut butter balls, my coworker’s flag cake, another coworker’s gingerbread, and another coworker’s chef husband’s steak and shrimp fajitas. Yum.
• My youngest sister had her 19th birthday. She’s in China, so I had to celebrate at the beach without her.
• As referenced above, I spent my sister’s birthday weekend at the beach in Delaware. My best friend and her husband, both friends from college, came down from New York to meet me; it was the first time I’d seen them since they got married (in Arkansas in April, in a ceremony that was missing one bridesmaid…Guess who?).
• I moved my June 30 chemo appointment up a day so that I could be unhooked by July 1 and spend the holiday weekend back at the beach. The first week after chemo is the most difficult for me appetite-wise (both because I can’t eat anything that is cooler than room temperature and because everything, even water, tastes a little strange), but I had a house full of family and friends to make sure I was eating enough. I broke out my 4th of July dress and enjoyed fireworks on the beach.
• Last weekend I traveled yet again, this time to Massachusetts to help pack up my aunt’s house. She lost her battle with non-smoker’s lung cancer in late April; her partner, my mom’s sister, lost her own struggle with breast cancer nearly eight years ago. The weekend was a whirl of emotions; I enjoyed spending time with my13-year-old cousin (my aunts’ daughter), her aunt and uncle, and her new family (all of whom I consider members of my new extended family), and I was happy to have three days to spend with my mom, who I hadn’t seen since March – but it was difficult to say goodbye to the house and its contents, and to see my cousin struggle with her decisions of what to keep, and what could be sold in tomorrow’s yard sale. I left DC with just a backpack and returned with my aunt’s suitcase, filled with one part memories and one part random items - a coffee mug, several books, lots of pictures, a letter I wrote my aunt when I was five, a recorder.

It’s been a long month.

The Harvest

I love children, and I can’t wait to have my own.  So after I was diagnosed, when it became clear that I would need chemotherapy, one of my first concerns was fertility.

Google returns many results of colon cancer survivors asking the question, but few answers; the one study I found had promising results, but the sample size was very small, only 15 women.  My oncologist told me that the effects of my particular chemo regimen (FOLFOX) on fertility hadn’t been studied much, but that at least one of her male patients had fathered children after his treatments.  Somewhat comforting, but hardly enough to assuage my fears.  She referred me to Shady Grove Fertility.

I called a week later.  Time was short; chemo was scheduled to begin exactly three weeks later, on April 18.  The doctor to whom I had been referred was out of town that week, but another could see me the very next day.  The receptionist transferred me to a nurse, who began to ask me questions to gather information prior to the appointment.  I explained my medical history and diagnosis, my voice matter-of-fact, unemotional.  I had been out of the hospital for nearly two weeks; I had accepted this.  Except then she asked whether I was married.

My voice broke; my strength disappeared.  I was crying.  I was supposed to get married on August 20 of this year, I explained,  but since I’d be on chemotherapy all summer, we’d decided to postpone the wedding.  The sudden breakdown took me by surprise – putting off our marriage had seemed like an obvious decision, and other than reserving the date and the venue, we hadn’t even begun planning. But it was the first big change this cancer had made to my plans, my future, my life.

The nurse said something kind and the moment passed; she gave me a phone number to call and we hung up. I dialed the number immediately – the Aetna Infertility Program. After answering another series of questions, I was told that no, I was not eligible for the program, that government health plans do not cover fertility preservation, and that egg freezing is considered experimental anyway, and would not be covered under any plan. Enter breakdown number two. (Did I mention this was also my first day back at work post- hospitalization, surgery, and diagnosis?)

The next day, still woozy from the procedure to have my mediport placed, I met first with the fertility doctor. If I wanted to pursue fertility preservation, egg freezing was the way to go – but I would have to decide immediately, since the process takes nearly two weeks. It is also extremely expensive.

What to do? This entire process might be entirely unnecessary – but what if it weren’t?

Then I met with a financial counselor, who told me about Fertile Hope, a LIVESTRONG initiative that helps survivors get financial assistance for fertility preservation through its Sharing Hope program. If I qualified (and I would almost certainly qualify), my medications would be donated, and the treatment would be discounted 50 percent. And if I qualified for the clinic’s own treatment discount program, the process would be discounted up to 30 percent more.

Suddenly this was sounding like something I could handle. How could I not?

I was approved for both programs and started the egg freezing cycle a few weeks later. (We pushed back my chemo start date by three weeks since the timing didn’t work out as well as we’d hoped; I still started within eight weeks of surgery, which is the standard treatment. This timing issue caused a few other personal kinks, which will have to be the subject of a separate post.)  After giving myself several injections each day for over a week and nearly daily doctor’s appointments, my egg retrieval was set for 6:00 in the morning on Sunday, May 1. I picked up a very good friend – who had every right to be sleeping – at 5:15, and we were off to the harvest.

I don’t remember too much after that – I had to put on a hospital gown and wait for a very long time (maybe the eggs needed to settle?), and once it was time to retrieve, they gave me general anesthesia (hence the friend – I needed a post-procedure DD). I’m told the procedure itself only took about 10 minutes; I was released shortly thereafter, grateful for the pain meds my friend had picked up at the pharmacy while I was under.

My fertility doctor called the next day – 16 oocytes had been harvested and successfully frozen. Maybe I’ll use them all – if you watch TLC, you’d think it was the Arkansas way. (Unlikely. But at least I’ll have the option.)

Reality check

I have chemo for three days every two weeks, and so far it has gone pretty well. Other than neuropathic effects from one of the drugs (sensitivity to cold environments and food/beverages, tingling and cramping in the hands and feet), when I’m not in the hospital receiving infusion or connected to my pump for the two days after, I can almost forget about all of this. Almost.

I haven’t been exhausted, and I haven’t been sick. I have drugs for nausea that I’ve taken only a few times, and for the most part even that has been preemptive – I’ve always been too thin, and especially after going a full week with no nourishment whatsoever at the beginning of my ordeal, I need to do what I can to avoid any further weight loss. I’m working full-time, though I have been going in later to give myself more time in the morning for breakfast. My coworkers know not to treat me like an invalid.

But sometimes reality hits. Like this morning, when way too much hair came out in the shower. Hair loss is not a side effect of the chemo I’m on – but hair thinning is. While I know things could be worse, seeing that much hair fall out was a reality check.

But then I went to work as always, and met friends afterward for happy hour and falafel. And went back to almost forgetting.

Survivors

Today is National Cancer Survivors Day – to celebrate, Stand Up To Cancer and LIVESTRONG have joined forces to encourage us all to show our support for cancer survivors by donating our Facebook statuses.

I have been floored by the number of people – some new acquaintances, others I knew prior to my diagnosis – who have opened up to me since March with their survivor stories.  Colleagues at work.  People who work at my gym.  The owners of Adams Express.

I am a survivor.  And I am not alone.

Actually, Arnold, it WAS a tumor.

Since my recent diagnosis of colon cancer, the question everyone (friends, family, coworkers, nurses, doctors, strangers!) wants answered is, “How did you find out?”  Good question.  How does an apparently healthy 26-year-old discover that she’s been living with a tumor in her colon that has grown to the size of a ping pong ball and spread to six nearby lymph nodes?

In the early days of Colorectal Cancer Awareness Month this year, I wasn’t feeling well.  But I guess I should go back even farther – I hadn’t, in fact, been feeling well for some time and had seen a gastroenterologist last May with symptoms I no longer recall.  Beginning in late January, I started to experience abdominal pain.  My fiancé, visiting from Spain, begged me to go to the doctor; I wasn’t as concerned.  Besides, since I hadn’t (and still haven’t)  established myself as a regular patient of a primary care physician, I knew it would be difficult to find a doctor who would see me before March or April.  So I decided to ignore it.

Over Presidents’ Day weekend, things got worse.  The pain was more frequent and more severe, and I lost my appetite.  I was visiting my aunt and uncle at the time, and declined their offers to take me to the ER (which at the time I thought were mostly in jest; they told me later that they had feared it was something serious).  I was feeling much better by the time I returned to Washington, D.C. that Monday, but I promised to make an appointment to see a doctor as soon as possible.

I was in luck – after calling at least 15 different clinics in the D.C. area and asking for the next available appointment for any internist or GI doctor (which on average was in June – an only 3.5 month wait!), I finally found a gastroenterologist who could see me the following week, on March 2.

He was stumped by my symptoms (which were likely vague, since I wasn’t experiencing many at the time of the appointment).  He ordered blood work to check organ function and to test for things like celiac, prescribed an acid blocker, and scheduled me for an endoscopy (upper GI) that Friday.  If we didn’t get answers, he said, the next step would be a CT scan.  After the appointment, since the weather was nice and I was feeling better than I had in a few weeks, I decided to walk to Georgetown (about 1.5 miles) and do some shopping.  When I arrived home a few hours later, I had a large dinner and went to bed.  I wouldn’t eat a meal again for more than two weeks.

The next day, I was Sick.  The pain in my abdomen was suddenly excruciating, and I spent the day throwing up.  I called in to work to let my supervisor know I wasn’t feeling well, and that I would see her Monday (I was already scheduled to be off that Friday).  I set an Out of Office response in my Outlook, announcing I would be back on Monday, March 7.  I didn’t return to that office, where I was supposed to be on temporary assignment until the end of June, until early April, when I went to clean out my desk (I went back to work at my regular position the last week of March).

By Friday I could barely walk.  I took a taxi to the hospital for my endoscopy, which was completely normal – the doctor brought out squeaky-clean pictures of my esophagus, stomach, and small intestine.  He also had the results of Wednesday’s blood work, which were also completely normal.  Still stumped.  But there was still hope for the acid blocker, which I hadn’t yet begun taking.  If things didn’t improve in a few days, said the doctor, I’d need to see him again.

My memory of the rest of Friday and that weekend is a blur.  I couldn’t move, couldn’t eat, couldn’t sleep.  I derived my only amusement from taking videos of my stomach, which had begun to undulate.  In a matter of seconds, it would inflate like a balloon on one side, slowly move to the other side, fully deflate, and then begin again.  I began to be convinced that I had an alien baby living inside of me.  What other solution was there?

On Sunday I finally called the hospital and asked to speak with the GI fellow on-call.  I had never been to an emergency room before and wanted to know the protocol.  What should I do?  How do I know I’m sick enough to warrant an ER visit?  She had no answers for me.  I hung up, frustrated, and decided to make another appointment with the GI doctor first thing in the morning.

It took a few hours to get in touch with the doctor, but he finally called at noon with clear instructions:  Go to the ER for a CT scan.  He would call ahead and tell them to expect me (they didn’t, but I have a feeling that the breakdown in communication was on the ER’s side, not my doctor’s).  I called my aunt, who was waiting to hear whether she needed to come pick me up to take me to the doctor, and told her the plan.  (She had been on high alert since the night before, when, in an unprecedented move, I declined a dinner invitation.)  I packed a small bag, thinking I’d end up either in the hospital or at my aunt’s house overnight.

The ER was not busy, so I didn’t have to wait long before they put me in a bed and gave me Zofran and Dilaudid.  After answering what seemed like endless bouts of similar questions from various nurses, medical students, and doctors, I was scheduled for a CT scan.

Several hours later, the on-call ER doctor came to tell me they’d found a large bowel obstruction in the scan, that I would need at least a colonoscopy and possibly surgery, and that I was going to be admitted to the hospital.  At that point, I was so grateful to have some sort of answer to my days/weeks/months of problems that I was much more relieved than scared.  An obstruction – that sounded benign enough.

This “obstruction” became a tumor the next day.  After the colonoscopy, one of the doctors paid me a visit.  My aunt was present, and we called my mom and put her on speakerphone.  Based on the type of tissue composing the obstruction (I believe she called it “bloody” tissue), all signs pointed to cancer.  Surgery was scheduled for that Friday to remove the portion of my colon containing the tumor, but we needed to be prepared for the almost certain diagnosis.

The pathology report came back on March 16.  The tumor was malignant.  Six lymph nodes also tested positive.  Chemotherapy would be in my future.

co·lon·ol·o·gy [koh-luhn-ol-uh-jee]

Anatomy .  a branch of science that deals with the part of the large intestine extending from the cecum to the rectum.

Origin: 2011;  by blending. Invented American English.

In mid-March 2011, at age 26, and after my first-ever trip to the emergency room, subsequent admission to and 11-day stay in the hospital involving a CT scan, x-rays, a colonoscopy, and finally surgery, I was diagnosed with Stage III Colon Cancer.*

These are my thoughts on and experiences with colon cancer, chemotherapy, and survivorship.

*Are those all proper nouns? Unlikely. But this is my Life and I take things Seriously, so when I write my full diagnosis, I tend to Capitalize.