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Happy New Year?

December 31, 2012

Around this time last year, I changed my gchat status to “2011 kind of sucked.” It was somewhat tongue-in-cheek – while true, I was still celebrating the news of my remission, and already feeling very positive about the new year. Although 2011 had brought me stage III colon cancer, the surgery, recovery, and chemotherapy hadn’t been too bad – and all of that was now behind me.

As it turned out, however, the “new year” – 2012 – more than kind of sucked. It started out well enough, and a clear scan in February reinforced my hope that my cancer had been a one-off thing, easily conquered. I had a colonoscopy in March that found one benign polyp – but I already knew that was there, from the previous scope. And this time they zapped it, to keep that polyp from turning on me in the future.

And then May brought the news of my recurrence. In June, I went back under the knife; pathology confirmed metastasis, and even offered me a new primary cancer with a mention of adenocarcinoma of the appendix, which would later disqualify me for a clinical trial. With July came a return to chemo, which continued through August. After an allergic reaction, I started a new drug in early September – and ended up in the emergency room later that night. After several hours there, I was admitted to the hospital, where I spent the next two and a half days. When I was finally discharged, I went home and broke my foot (but refused to see the inside of a hospital again that day, so waited until the next morning to get an x-ray).

With October came more surgery – the Hyperthermic Intraperitoneal Chemotherapy (HIPEC) procedure, or, as I prefer, shake-and-bake. This meant my longest scar yet, as the first step was to make a large incision, open me wide, and remove all visible tumors. The shaking and baking took place in the second part, when my abdominal cavity was filled with heated chemotherapy which was then sloshed around for 90 minutes. (You can see an animation of the procedure here.)

I did not bounce back from this one as fast/easily as I had from my previous two surgeries, so recovery was the focus of November, and then December as well.

It wasn’t, of course, all bad. I traveled a little, saw a lot of my family, and made some great new friends. Still, I’m hoping for a better 2013. I am not naïve – I know that cancer will now always be a part of my life, and that 2013 will be my first full year of treatment. But I can hope that cancer plays less of a leading role in the new year.

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I Dreamed a Dream

December 24, 2012

With the long-awaited release of the new Les Miserables movie on Christmas day, I’ve had this musical on my mind for nearly two months. The songs run through my head nonstop, a constant soundtrack to my daily life. No song has come up more often than “I Dreamed a Dream,” and hearing this steady stream of beautiful but tragic lyrics makes it difficult to resist the temptation to identify with some of them.

I dreamed a dream in time gone by

When hope was high and life worth living

I dreamed that love would never die

I dreamed that God would be forgiving

Then I was young and unafraid

And dreams were made and used and wasted

There was no ransom to be paid

No song unsung, no wine untasted

But the tigers come at night

With their voices soft as thunder

As they tear your hope apart

As they turn your dream to shame

……..

I had a dream my life would be

So different from this hell I’m living

So different now from what it seemed

Now life has killed the dream I dreamed. 

I certainly consider myself fortunate that my life is not generally a “hell” – since my diagnosis in March 2011, I have been able to carry on with much of my normal routine. That said, small constant reminders that I am not whole sometimes eat at my spirit.

I tend to share the funny side of my cancer, or throw lighthearted remarks into serious topics to keep the tone upbeat. People often tell me I make it look easy. It’s not.

One of my nurses worried out loud a few months ago that I’m holding it all in or putting on a front. Of course I’m scared. And sometimes I’m in pain. But I choose not to dwell on the negative “what ifs.” I can’t always keep my mind away from them – sometimes I make plans in my head for little things I want to do a few months or a year or even years from now. And then I suddenly wonder whether I’ll be able to carry them out. Will I be weak? Sick? Will I still be here?

I hope so – and that’s the truth, though maybe not the whole truth. My positive attitude is genuine – but when I’m not feeling it, I’m less likely to let it show. If I’m feeling down, it doesn’t do me any good to upset everyone else.

I’ve heard people say that they are thankful for their cancer, that it’s taught them things about life and happiness and friendship. I am not grateful. I’d give it back in an instant if I could. But reality doesn’t work that way, so I soldier on with a smile on my face as often as possible.

My dream has changed over the past year and a half, but it has not been killed. I am still young, but not unafraid. And still I dream.

The Mall

September 3, 2012

I’m not a huge shopper, and definitely not a big mall-goer – which is why, after my last surgery, it amused me and my mom that my surgeon and his team measured my recovery in terms of whether I could go there. “You’ll be at the mall in no time!” or  “You can walk a little, but you shouldn’t go to the mall just yet.” or “No, it’s too soon for you to go back to work. You can go to the mall, though.” I’m not sure why they thought that would be somewhere I’d like to be, since I’m neither young enough to hang with the teenage crowd, nor old enough to be a mall walker. The fact that we laughed and/or made sarcastic remarks in response to the mall references did not deter them.

Yesterday, I finally went to the mall. Not to mark my 89-days-out-of-surgery milestone, but to learn about – maybe even purchase! – makeup.  I will be 28 in exactly three weeks, and yesterday was only the third time in my life that I’ve ever worn full makeup.

My previous experiences had not ended well. The first time was during a high school oral communications class, about 12 years ago. We had to do how-to speeches, and one of the girls had chosen putting on makeup as her topic. (Sidebar: I chose to teach the class how to lie with my speech, which I thought was a much more reasonable use of our time. The Baptist preacher who taught the class was not convinced.) The teacher suggested that it might be a good idea to demonstrate the steps on someone else while she gave the speech. A male classmate volunteered, which everyone enthusiastically supported – but then someone proposed my name. I tried to decline, but there was no avoiding it. Everyone agreed that I would make a far more interesting subject than the class clown. I was horrified by the end result. My classmates – especially the guys – were very nice, and told me how pretty I looked. But I was sure I looked like a clown – and unfortunately, no one had prepared a speech on how to remove makeup.  After an argument between classes with the principal, I spent much of the next class period in the girls’ bathroom, doing the best I could with non-absorbent school-quality brown paper towels.

I avoided makeup for nine more years, until I agreed to help a friend who was trying to become a model by posing with him in some pictures for his book. Another friend of his acted as our stylist for the day, and took charge of my outfit changes and makeup. Once again, the result was scary (see photo evidence below) – and made my face and eyes hurt. By the end of the shoot, my eyes were teary and bloodshot.

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Since I do not have any positive associations with makeup, I was extremely apprehensive about yesterday’s trip. I wouldn’t have gone at all, except that tomorrow I start a new treatment, the main side effect of which is an acne-like skin rash. I have seen this rash, and it can be nasty. Studies have been done that link severity of the rash to effectiveness of the treatment – so instead of hoping it doesn’t happen to me, I decided to make plans to live with it. I don’t think I’m generally very vain, but I know I will be self-conscious if I develop skin problems on my face.

The night before last, my roommate had given me a general tutorial on makeup. Not on how to apply it, but on different types and their uses. Primer, concealer, foundation, tinted moisturizer, powder (this one is actually labeled as “makeup”), blush (which I called “blusher” – she thought the “er” was unnecessary), eyeshadow, and the brushes used to apply any of the above. This was all very useful, since the extent of my makeup knowledge until then had been applying and removing mascara (and even that I was barely proficient in, since I saved it for special occasions – to illustrate my lack of knowledge, I’ll share that I recently texted a friend as I was getting ready to find out whether I was supposed to put it on both upper and lower lashes, or just upper).

Before we walked into Sephora, my friends (I took not one, but two! for guidance and moral support – and to make sure I went through with it) coached me on what to say. When a clerk asked us if we needed help, however, I froze. Had I been alone, I would have said “No, thank you.” and walked out. Instead, I managed to communicate that I wanted to have my makeup done. After a short wait, I was seated at a counter. I was terrified. The “castmember” (that’s what they appear to be called at Sephora) asked me what I was looking for, and I explained my upcoming treatment (and my extreme ignorance of and aversion to makeup). I wanted to be able to cover up blemishes if necessary, but I did NOT want to look too made up in the process. She said she would use a couple of brands that use more natural ingredients, and went off to collect supplies.

Her first attempt was a disaster (in my eyes, at least). I could see the makeup on my face, and I told her that. Part of the problem was that she was trying to give me something I would be able to use throughout the year – I won’t be as tan as I am now for long. The problem is, I start the new drug tomorrow. I want to be armed with something I can use now. So I got rid of my Casper the Friendly Ghost face and we started again. The second try was much better – I even let her do my eyes! An hour or so later, I walked out of Sephora with a bag full of supplies.

At first, I was super aware of the makeup. After an hour or so, however, I more or less forgot about it. After all, I more or less just looked like myself. Strangers on the street weren’t going to notice that there was anything unusual about me.

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When I got home, I threw the bag on a pile of other things in my room and stopped thinking about it. Who knows – maybe those things will go unused, collect dust. But now I have an option, in case I am in the 89 percent of patients who get “rash or shedding of the outer layer of the skin.” Time will tell.

Oophorectomy

August 6, 2012

Oophorectomy is the surgical removal of the ovaries – one part of my June surgery. Since many people seem not to know the ramifications of this procedure, however, allow me to share.

Removal of the ovaries means menopause. Menopause means, among other things, osteoporosis and hot flashes. So much fun to be had! My scan last Monday, only eight weeks out of surgery, showed “minimal degenerative disease of the spine.” Yikes. Time to get serious about my supplements. And my GI oncologist had warned me about hot flashes when she and the GYN oncologist agreed that I needed surgery. At that time, minor side effects were the least of my concerns – especially ones that I didn’t believe existed. I had never given much thought to hot flashes, but I think I just assumed that it was something older women referenced when they were feeling a little warm.

The hot flashes began fairly soon after surgery, and it turns out “a little warm” is quite the understatement. Let’s be clear – I grew up without air conditioning, in a house that got so hot in the summer that my crayons melted if I left them upstairs (true story). I can do hot. This, however, is different. It’s similar to the feeling I get when I’m very ill and about to faint. It comes without warning, and suddenly I feel like my blood is boiling. I’ve always been very cold natured, so this is a new experience for me – and it means that now, at work, in addition to the space heater I have under my desk to combat the over-airconditioning of the office, there’s a fan at the entrance to my cubicle to occasionally cool me off.

Not all of the consequences are bad, though. When, a few weeks ago, a restaurant takeout container leaked into my purse, I found myself without any tissues or napkins to mop up the mess. What I did have, however, was a small side pocket full of highly absorbent feminine products that I no longer needed to carry in case of emergency. I may have gotten some strange looks at the bus stop as I unwrapped tampons and pads and used them to sop up the pool of salad dressing that had formed in the bottom of my bag, but I was carrying a dry purse by the time the Circulator arrived.

Lovenox

July 13, 2012

Not pictured: About 20 more of these.

Dear Lovenox,

It’s been a long month. Thank you for helping me avoid deep vein thrombosis blood clots, and the pulmonary embolism that they can cause. I will not miss you, however, or the multicolored (some might say beautiful – see below) sunsets you left all over my body.

Sincerely,

Rachel

Statistics

June 27, 2012

I am not a statistic – I said so much in a new video resource guide for patients diagnosed with Colorectal Cancer developed by the Chris4Life Colon Cancer Foundation.  But with my relapse, which brought with it a progression to Stage IV cancer, I got curious; so a few days ago, I looked up colon cancer five-year survival rates.  I was at first shocked by what I found – I was not expecting to find anything nearly as low as eight percent (or even six percent, depending on the source).  What happened to colon cancer being one of the more curable cancers?  But after my initial freakout, I started to think reasonably – and thought of several reasons this particular statistic would not necessarily apply to me.

Statistics can be overwhelming – and even misleading – mainly because many of us do not know how to read and interpret them.  No one explains this better than Stephen Jay Gould in his essay The Median Isn’t the Message.  Gould, an evolutionary biologist, was diagnosed at age 40 with abdominal mesothelioma, an incurable form of cancer with a median survival rate of only eight months after diagnosis.  He lived, however, for twenty years longer, before passing away from an unrelated form of cancer.

After looking at the survival curve for abdominal mesothelioma, Gould realized several things.  First, a median survival of eight months meant that half of the people would live longer.  Young, otherwise healthy, and with access to good medical attention and a positive attitude, he had a good chance at being in that group. (Check.)  Second, the statistical distribution was right skewed, stretching out for several years.  Third, that statistics rely on a specific set of circumstances – typically, the conventional treatment at the time the study was done.

By the time I looked up survival rates, I had already read Gould’s article – and I used its reasoning to talk myself off the ledge.  First of all, the statistics I’ve cited above are based on data from 1991-2000.  The conventional treatment at that time did not include oxaliplatin, which was not approved by the FDA until 2004, but is now part of the standard chemotherapy regimen.  In addition, according to the American Cancer Society, 90 percent of colon cancer diagnoses – and 94 percent of deaths – occur in people over the age of 50.  Since a five-year survival rate (or at least the one I found) is imperfect – it does not take cause of death into account, simply counting how many patients are alive five years after diagnosis – the fact that most patients are at least twice my age is significant.  As David Servan-Schreiber, author of Anticancer, writes, “variation is the very essence of nature.”  Factors such as my age, and even my gender (both incidence and mortality rates are 35-40 percent higher in men than in women), place me in the variation as opposed to the mean or median (ideally, to my benefit).

Finally, I wanted to share an excerpt from the Gould article that I find especially encouraging:

“Attitude clearly matters in fighting cancer. We don’t know why (from my old-style materialistic perspective, I suspect that mental states feed back upon the immune system).  But match people with the same cancer for age, class, health, socioeconomic status, and, in general, those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say, tend to live longer. A few months later I asked Sir Peter Medawar, my personal scientific guru and a Nobelist in immunology, what the best prescription for success against cancer might be. “A sanguine personality,” he replied.”

If nothing else, a positive attitude is something I have maintained since my initial diagnosis, and I do not plan to let go of it any time soon.  Learning of my recurrence and reading the statistics has been sobering, but constructively so; in some ways, I need to take this more seriously.  I must do everything I can – in terms of diet, exercise, stress reduction, and general health – to get better.  So I will – and my optimism will remain strong.

Surgery Redux

June 13, 2012

Well…it ain’t over til it’s over.  Almost four weeks ago, on May 17, I went to the doctor for my six-month remission appointment.  As far as I was concerned, this one was in the bag.  I didn’t even take anyone with me.  The CT scan I’d had several days before was obviously going to be clear, like all of my scans had been since my surgery in March 2011.

This time was different.  The resident asked more probing questions.  When my oncologist came in, she did not lead with good news.  Instead, more questions.  More time spent on the examination table, poking and prodding my abdomen in search for a spot that would draw pain.

Finally, she broke the news:  the scan had shown a “shadow” between the stomach and colon.  In addition, a cyst I’d had on my ovary since this ordeal began more than a year ago had changed.  An appointment would be scheduled a couple of weeks later with Interventional Radiology to see whether they could biopsy this shadow (I was headed out of town eight days later to go rock climbing in Utah, so sticking a needle through my stomach before that was a no-no).  I’d see a GYN oncologist about the ovary.

It could be nothing…but it wasn’t nothingNothing would have been a clean scan.  Still, it didn’t sound terrible.

It occurred to me that I might be able to resolve the ovary issue before I left town; the GYN oncologist was able to fit me in a week later, the day before my Friday departure.  This time, I asked a friend to come with me.

The doctor walked in saying something like, “Let’s have a look at these tumors that are all over your ovaries.”  The word tumor?  And plural?  Ovaries, plural?  I’m pretty sure my friend and I exchanged nervous glances at this point.  Doc then proceeded to examine me, as he explained that the scan had shown that both ovaries were enlarged, and filled/covered with (or entirely replaced by) “non-solid structures” that did not seem to be cysts.  He also referred to “nodules” (again, plural?) in the tissue between the stomach and colon – what my GI oncologist had called a “shadow” on the scan.

After the exam, we moved into a “nicer” (carpet, comfortable chairs, flickering fluorescent light, lamp without a lightbulb and with the shade askew) room to discuss the implications of all of this.  He recommended major surgery to remove the ovaries, which would be scheduled for the second or third week of June.  I surmised that this would mean I could never have children, so he quickly drew a diagram of lady parts on the back of a sheet of paper to show me that as long as they were able to leave my uterus behind, the eggs I banked last year could be fertilized and implanted, no prob.  Phew.

We found my GI oncologist, who seconded his recommendation.  These things were not going to self-correct, and would likely begin to cause me problems and/or pain very soon.  The surgery would be scheduled as a possible total hysterectomy, in case the surgeon (who would be the GYN oncologist) saw something “grossly abnormal” during the procedure and decided everything had to be removed, or in case the uterine tissue sample taken for biopsy during the gynecological exam came back from the lab showing evidence of cancer.  Return of the nerves.

I left D.C. for Arkansas the next day; I was headed home for my Mom’s 60th birthday before my big Utah adventure.  I didn’t want to ruin the birthday party, so I saved the big announcement for Saturday.  I was very nervous, but pleased with the outcome; I used the fairly extensive notes I’d taken in my appointment two days prior to give all of the details and answer questions, and made tentative plans with my mom for her to come for the surgery/recovery.  And then my dad lightened the mood by telling anecdotes of horses and skunks in houses, old men falling off docks in their rocking chairs and losing their glasses in the lake, and children on potty chairs rolling down interstate embankments.  So that was that.

Monday I left for my rock climbing trip with First Descents, an organization that does free! adventure therapy trips for young adult cancer survivors.  What timing!  I had signed up for this months ago, and my experience at camp warrants its own post.  So for now, suffice it to say that the week, spent in and around Moab, Utah, with limited cell phone service, included many discussions of my uterus (and other campers’ cervices).  When, in the middle of Arches National Park, we drove through a spot with enough service for a voicemail from my nurse to come through, there was much celebration – and many uterus/uteri cheers – when I reported that the uterine tissue biopsy had come back benign.  The next day, Friday, when we stopped in town for gelato after a day of canyoneering, I received another voicemail.  The surgery was scheduled for Tuesday.  Tuesday!  As in, four days later.

After the initial shock, and though I was worried that this wouldn’t give my mom enough notice to get to D.C. in time, I decided that it was just as well.  I was as prepared for surgery as I would ever be, and the sooner the procedure, the sooner I could begin to recover.  I returned home the next evening, in time for my spring league ultimate frisbee tournament on Sunday (although I had a lot to do, who knows when I’ll be able to play next?), went to the hospital for pre-op work on Monday, and checked in for surgery on Tuesday morning with my mom, who had arrived Monday evening.

The surgery lasted about two hours; when I woke up in the recovery room, the first thing I did was ask about my uterus (even though I’d forget and ask again).  Intact!  They’d taken my appendix, however.  I told them I didn’t care.  And my grapefruit-sized ovaries, of course.  And finally, the nodules.

After five days in the hospital, I was discharged on Sunday.  Now, waiting for pathology results to determine the next steps for me.

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