I just found out one of my dear, dear friends has colon cancer. Some of you have met her before and know how much i owe her. She saved me from myself time and time again. Here is her story:
Dear Friends,
I’m sorry to email you all together like this, but you can see that you are part of a select group, unlike the massive story emails I usually send around at random. This too is a story email, but of a vastly different sort than I usually send. Yes, it is a tale of adventure, and it is full of news and other Kit updates. The adventure is scary and interesting and entirely unlike any other I have ever found, but I didn’t go looking for this one. The news is shocking and not all bad. In fact, the news, relatively speaking, is all good. I’ve prattled on for long enough now, I’m sorry. I don’t really know how to share this news, so I may as well just spit (or type) it out…
I have colon cancer. I’m sorry to blindside you, but there’s really no good way to share this news. I didn’t mean to keep this from you, but didn’t really know how to tell you, and then I began treatment before I could really get my head straight enough to tell the story, and then once I was in treatment, I couldn’t stay awake for long enough to write it. These are excuses. The truth is I dreaded writing this email.
The details in a nutshell are: I WILL LIVE. There is no doubt about this oh so important detail. My prognosis is excellent, partly due to my very good health (cancer aside), and partly due to the fact that on average I’m half, or less, the age of the people in cancer treatment. Lucky me. I am in treatment at Boston Medical Center in Boston, Massachusetts. I have a team of extraordinary doctors whom I trust completely. I was diagnosed in the first week of October (I’m sorry to remain silent for so long, I truly am…), and began appointments in Boston by Halloween. I have completed 6 weeks of radiation treatment and chemotherapy, and now I am nearing the end of my 6 week break for recovery, and I have surgery one week from today, February 16th.
The details out of the nutshell are: I have been diagnosed with a condition called FAP (familial adenomatous polyposis). The fun part of the story is that this is supposed to be an inherited genetic mutation, but since I always do things that are unexpected, I get to be the one to establish the family history of colon cancer. Bonus! I was kind of sick all this summer, but never thought anything of it, since I’ve never been sick before, ever. I lost about 10 lbs. during the month of June, but still didn’t worry. Those of you who know the story of The Hotdog Lady and my ongoing battles to remain in business realize why I attributed my weight loss to the stress I was under all summer in the midst of the chaos of small town politics and bureaucracy. It was July before I even noticed that something was wrong with me, and that my stomach’s reaction to food was abnormal. It was late August before I decided to pay a visit to my brother’s doctor (I didn’t even have my own…), and mid-September before I was able to get an appointment with the gastroenterologist he referred me to. That lovely and compassionate man looked at me for 10 minutes, charged me $130.00 and told me to come back for a follow-up in the middle of November. On Thursday, October 6th I ended up in the Emergency Room after an episode of lots of blood coming from somewhere that it’s not supposed to. I was admitted and had a colonoscopy done the following morning, after being reassured by another gastroenterologist (this one actually WAS lovely and compassionate) that it was better to know what was wrong with me after I asked if I should be nervous about what he would find, since it certainly wouldn’t be cancer.
I woke up after the colonoscopy to find my 2 nurses and my gastroenterologist, Dr. Flavin, on the verge of tears as they told me that they had found hundreds of polyps and two masses that they’d biopsied because they were nearly definitely cancer. Wow. Dr. Flavin kept me in the hospital through the following day for additional tests and scans, and I returned home on Saturday afternoon and found my perspective of my world as I knew it changed.
I spent the rest of the weekend studying online, and found just enough information to make me dangerous in a doctor’s office, but not enough to reassure me, yet. Dr. Flavin was fantastic. Before I left the hospital he promised me he wouldn’t drop the ball, and he never has. He went to work immediately to get me the information I so desperately craved, and also to find a doctor who was capable of treating me. Before the week was finished, he has the positive results of my biopsies in hand, confirming my worst fears, and had also made progress with my insurance company to make sure that I would be treated in Boston instead of in Portland, Maine like they preferred. If I have learned anything at all in this process, I’ve learned that if you’re unlucky enough to be diagnosed with cancer, just be certain that you’re lucky enough to be within driving distance of Boston. It’s the most wonderful thing, driving into Boston and feeling all the medical brains crackling all around you, just waiting for a chance to fix you.
Dr. Flavin wrote letters. He faxed letters. He made phone calls, and by the beginning of the following week had confirmed that I would be treated at Boston Medical Center, the teaching hospital for Boston University, my insurance would cover it completely, and that my surgeon would be Dr. James Becker, the Surgeon-in-Chief of BMC who just happened to specialize in colon cancer.
Dr. Becker is a wonderful man and I trust him entirely. My first appointment with him was on Halloween, go figure, and I never doubted for one second that I was in the best possible place for my treatment. My comfort was also bolstered by his resident, Dr. Kelly Tyler, who gave me her cell phone number when I left the exam room and told me to call her with any questions, and then proceeded to call me every day for the first week and ask what questions I had thought of. She has since rotated out of Dr. Becker’s office, but has told me that she will come back for my surgery, and that makes me happy.
I have two tumors, double fun, and thankfully only 2 lymph nodes involved, and so far, no further spread. I began radiation therapy on November 14 (happy birthday Daniel) and chemotherapy on November 16 (happy birthday Kit). The radiation was a total of 28 treatments, 5 days a week. It’s a funny thing, the word RADIATION sounds like this big scary intimidating word, and yes both the machine and table were very intimidating, but the treatment itself was very anti-climactic. My treatments took about 30 seconds per day, but it took about 10 minutes to get me all lined up properly on the table. My radiation therapists were phenomenal…It takes extraordinary people to make radiation so much better than it so easily could be, and in fact to actually make you look forward to radiation, and they succeeded. I love them all. My chemotherapy was surprisingly and similarly simple too. I now have a portacath (port) in my chest, which is really just a titanium and silicone funnel for drugs so my veins don’t freak out with too many needles. It’s the size of a bottle cap under my skin. Because I have a port, my oncologist was able to send me home with a nifty little pump contraption full of chemo that would provide a slow and steady drip through a tube and needle into my port so that I wouldn’t have to sit in the oncology clinic for hours. By taking the pump home with me (I carried over my shoulder it just like a little purse) I was able to minimize the side effects of the chemo itself. I didn’t lose my hair. I carried the pump for 5 ½ days, and then had 1 ½ days totally free and disconnected. It was a long, long, long six weeks. I slept a lot. I ate very little. I finished my radiation treatment on December 23rd and I finished my chemo on December 24th (the best Christmas present I could have wished for!).
After I finished my first phase (out of a total of 3, hopefully), I earned a 6 week break to recover, and let the radiation and chemo residuals continue to battle the alien in my belly. I slept through the first week, and then decided to take advantage of my only opportunity to leave New England this year and I had a wonderful 2 week trip to California with my sister Dinah, our nearly sister Tana, and my oldest friend, Daniel. Dinah moved out to Los Angeles just before Thanksgiving, and came home for Christmas, and then we all served as couriers to help her move her belongings west. We took a 5 day trip by train from Boston to Chicago to Denver to San Francisco to Los Angeles that was total bliss. We moved a vast amount of stuff, each of us being allowed to check 100 lbs. of luggage, and crossed 3 mountain ranges in the heart of winter. What fun! We arrived in Los Angeles and spent the next week being warm, loving our flip-flops and pilfering every Goodwill we could find in search of furniture for Dinah’s fantastic studio apartment in Hollywood. If the rental car agents could only have seen the strange loads we transported in their compact cars! Another perk of the trip was that I could forget that I was supposed to be sick, and I felt better than I had in months.
I returned home 3 weeks ago and have been immersed in the hospital world ever since. I am constantly being scanned and scoped and tested and sampled in preparation for my upcoming surgery. They can’t tell for sure how my tumors have responded to the radiation and chemo, but they know that they have responded, so that’s good news. I kept holding onto the vision during my first phase that if my treatment was making me feel so crummy, just think about how those god****ed tumors must feel!!!
My surgery will be a complete ileostomy. In real words, that means they will be removing my entire colon. In olden days, that would mean that I would have an ostomy bag for life, but modern medicine being the amazing thing that it is, that is not necessarily my only option. Dr. Becker pioneered a new type of reconstructive surgery called a J-pouch that allows bowels to function in a completely normal capacity even when missing the entire colon, and until this innovation, the only possibility for colon cancer survivors was a colostomy bag. Now, thanks to Dr. Becker and others, many survivors have the option for reconstructive surgery after a colostomy or ileostomy, and hopefully I will be among those candidates. My lower tumor is low enough that he won’t know until he is doing my surgery if I am a candidate for a J-pouch, but he has told me that there is every reason to hope for one, and I take comfort in that. In fact, though, either option is fine with me, as long as it allows me to continue to live and breathe and travel and write and swim, and both options give me all of those luxuries.
I just read back through this story and I’m shocked at how long it’s become. I’m sorry to have been out of touch for so long, and now you know why, or sort of...and if you’re reading this email, then you know me well enough to understand how I disappear under rocks from time to time and need to be coaxed back out again…
I hope this finds you all well, and I love you all.
Fondly,
Kit