My Cautionary Tale

           April 3^rd, 2014, after a colonoscopy, is the first day the word tumor appeared in my life. A week later it was confirmed through the results of the biopsy done during my colonoscopy that I had colon cancer. Then came a “routine” CT scan of the pelvis and abdomen. That scan showed I had stage IV colon cancer; the cancer had spread to my liver with over 40 lesions there- as my oncologist would tell me later, “Your liver was more disease than liver.” Within the month I had a port surgically implanted in my chest for chemotherapy, and I began the first of what is now 132 chemotherapy treatments and counting. As of this writing it’s been 5 years since my diagnosis. Statistically only 14% of people diagnosed with stage IV colon cancer live that long (though that number seems to be growing steadily, if slowly). Some people celebrate their “Cancerversary”- the date they were diagnosed. I’d rather not give cancer top billing- it takes so much as it is, why give it that too? Living 5 yeas with this disease where the median average survival rate is 25 months (I’ve now made 60) has given me a lot of time to think about how I got here. How did my life get so fucked up? Am I to blame for what happened to me? Why did it happen to me? Were there signs I missed? Ignored? The simple answers are cancer, yes, bad luck, yes, and yes. However those simple answers are not why I’m writing today. I’m writing today so you can see that what’s happening to me could have been prevented- I could have prevented it, if I had spoken up sooner and not ignored the signs. Colon cancer is preventable if caught early enough. Maybe after reading this some of you will know what those signs are and speak up and prevent yourself from getting it.

            About 10 years before my diagnosis (give or take a year or 2) I noticed bleeding when I had a bowel movement. This went on for a while until one day I saw a lot of blood in the bowl. That scared me, so I called my Dr. and made an appointment. After examining me, he told me that it was hemorrhoids and nothing to worry about, and that we could treat it. This was my first rectal exam, and like most people it was not my favorite experience. So thinking it was nothing dangerous I went about my merry way. As time progressed the bleeding happened more often to where it was happening pretty much every time I went to the bathroom. The bleeding wasn’t just when wiping, but sometimes there was blood in the bowl, and in my stool. All of this was pointing to a larger problem that I was ignoring.

            I was ignoring it by telling myself “It’s only hemorrhoids” and “it’s not anything serious”. Also, I didn’t want another rectal exam. A Dr. would ask me if I was bleeding when I went to the bathroom and I would say no. Yup, I lied to my doctors. I just put my head in the sand, which of course left my ass in the air. I lived with this, and ignored it for the better part of a decade, until March of 2014 when I complained of constipation to my Dr. and he sent me for a colonoscopy (which I have previously detailed here). I finally listened to my body and to what it was trying to tell me for years. Unfortunately, by that time it was too late for me. It went from something that could be cured if caught early enough to something that was going to kill me. Don’t let it be too late for you. Listen to your body. Get checked if something is wrong- if there’s blood in the bowl when you have a bowel movement (especially dark blood), if your stool is tarry black and/or has blood in it, if there are changes in your bowel habits. See your doctor. Get screened. One bad night of preparation for a colonoscopy or one rectal exam is far better than any day of chemotherapy and if you’re like me, a stage 4 death sentence.

            People have told me I’m an inspiration because of the way I’ve handled having cancer. A dubious honor I would rather never have. I handle it the only way I know how, because of who I am. Cancer changes you in many ways, steals many things from you, but it doesn’t change who you are. Please take my word for it- don’t test the theory for yourself. I’m not someone whose footsteps you want to follow. Mainly because the amount of footsteps I have left are a lot fewer than I, or anyone would like. I know I’d like more, but I know I’m not going to get them. Make sure you get as many as you can. I’m not an inspirational tale; I’m a cautionary one.

Houston, Do We Have A Problem?

After two months more of Folfiri & Vectibix I had a PET scan. The lymph node that had been enlarged and metabolically active (cancerous) shrunk to 1.5 cm and showed as metabolically inactive. That and my CEA still being <.5 put me squarely back as NED (No Evidence of Disease) for the third time. This was on May 25^th. May 30^th was my next treatment (just Vectibix as maintenance) and my CEA was up to .6. The next month it was .9, and the month after that 1.2. Great, now the number was going up- but there was that clean scan so nothing to panic about… yet. You try having stage IV colon cancer, watching your number go up and try not to panic. It ain’t easy. As I’ve said before, I’ve been lucky in an unlucky situation, as I’ve responded well to every treatment prescribed so far. Of course the cancer eventually builds up resistance to these treatments and I move on to the next one. The problem with that is, I’ll eventually run out of treatment options. I talked to my oncologist about looking at what other treatment options might be out there for me, including clinical trials. He agreed that now would be a good time to start looking and told me I should go to MD Anderson in Houston, TX. - the top cancer treatment hospital in the country.

I called MD Anderson and made arrangements for them to get all my medical records from my local oncologist. They told me that after they checked out my records, if they thought there was something they could do, they would schedule an appointment for me. That appointment was scheduled for August 10^th. This had me both excited and nervous. It was around this time my CEA was going up and hit the aforementioned 1.2, which made me nervous, but I was excited that they might have something that could help me. They have an online portal for patients and I could see that they already had a full morning of appointments for me lined up: 8:30 AM: Registration, 9:00 AM: Meeting with the Dr., 10:00 AM: Blood work, 10:25 AM: CAT scan with contrast, and then I would have a follow-up appointment with the Dr. the next Monday. My family is in Texas north of Dallas, so I planned to drive up and spend a couple of days with them and to drive back in time to make that appointment.

I got to my appointment only to be informed that I had missed part of the online “paperwork”- eight pages of medical history questions that I had to answer before going in. This put me behind schedule. When I saw the Dr. (who was running behind as well) he told me there wasn’t going to be much he could tell me until he saw the blood work and CAT scan results; a little frustrating, but understandable I guess. So on I went to get my blood drawn (one of the best sticks I’ve ever had), and the CAT scan. MD Anderson is huge. To get from phlebotomy to the CAT scan there was an indoor shuttle, and it still took about 10 minutes to get there! With the delays, I didn’t get to the CAT scan until 12:30, and they didn’t scan me until 3:00. The contrast I had to drink was different than the contrast I got back home. At home I have the “delicious” barium smoothies to drink (I go for the banana flavor). Here they gave me options for drinking the contrast in 32 ounces of water, Crystal Light, orange juice, or Sprite (what movie theaters call a medium drink). I picked Sprite. Almost two hours later as I was lying down for the CAT scan, the radiologist asked me if they explained the rectal contrast to me. I told her they neglected to mention the rectal contrast. She started to explain that she was going to “take a tube and insert it…” at which point I cut her off and politely told her that I was going to decline the rectal contrast. She said no problem, and we proceeded without it. I looked at it this way; I’m scanned and tested regularly, and I know there’s nothing back there anymore. Also, I was going to be driving 5 hours north right after, and wanted to have a comfortable time sitting for that long. The scan went well, though they inject the contrast at a quicker rate than I’ve had before. The iodine-based contrast they infuse creates a warm feeling and the urge to pee. The ones I’ve had in the past only made my torso and pelvis get warm, but this faster rate had the warmth expand all the way up to my face and down my arms. It was surprising, but went away as quickly as it started, and I was done with my appointment. I was now free to leave, go visit my family, and come back on Monday.

I spent the next couple of days having a nice visit with my family ( eating fresh chocolate chip cookies and getting beat at Flux by my nephew). I drove back to Houston on Sunday evening to get in for my follow-up on Monday, after which I was flying home. When I saw the Dr. he told me my CEA was 3.1, at which point I started to panic. He said that their lab results are usually on the high side, and it’s better to use the same lab consistently to get a more accurate result (something my oncologist has said as well). The other reason not to panic was that my CAT scan came back clean. However, when I saw the report I saw that wasn’t completely true; the lymph node that we had spent time shrinking had grown from 1.1mm x 1.5mm to 1.2mm x 1.9mm. The CAT scan can’t tell if it’s just enlarged or if it’s enlarged and “metabolically active”. That would take a PET scan. My oncologist at home has me scheduled for that.

The Dr. then told me that there was really nothing they could do that I was not doing already. He told me that since there was no active cancer that trials were a no-go at this time, and I should stay on the Vectibix until my cancer was resistant to it, and then go back on Folfox (the Howitzer of chemo that I started on when I was first diagnosed), and then call him and look for clinical trials when the cancer started advancing while on that. I asked about Lonsurf, which while it doesn’t usually decrease the cancer, it could keep it stable for a period of time. He dismissed the drug out of hand (I was so shocked by this and his saying there was nothing else to do, that I forgot to ask why). Also, I was getting pissed off. Why dismiss any course of action that could help prolong my life? I don’t want to die. I’m not ready to die. I am fighting to live, and will use whatever means necessary to do so. Another reason I was angry was because when I contacted MD Anderson they said they would look at my records and would only see me if they felt they could help me. My records showed that I had no “active” cancer. Why did they have me fly in, wasting my time, energy and money when there was nothing they could do? It’s both a good and bad thing when you’re seeing a doctor in a hospital in Texas and the smartest person in the room is back in Tamarac, Florida. So here I sit, in cancer no-man’s land; I have stage IV colon cancer but I’m NED, waiting to get sicker (my latest CEA was up to 1.9) so there’s something more that can be done. Yet another “new normal.” For now I’ll just wait and see what the PET scan shows…

Part 11: New Beginnings

         It’s been a while since my last update. I didn’t realize until I looked that it had been well over a year. Time moves strangely when you have cancer, and it’s hard to believe how long it’s been since I last wrote. The daily grind of fighting cancer, and the cumulative side effects just didn’t have me in the proper headspace to write. Also, telling my story started feeling like I was just complaining, because there was so much that was going wrong. And honestly, life just got in the way. I was working full time while doing chemo during the last year. Our 19-year-old cat Miss Kitty- who was a great nurse to me- had to be put to sleep. We got 3 new kittens: Arya, the many-faced cat, Alice, the Magician, and Vincent, the van Gogh. We sold our condo and bought a townhouse (with sales falling through on both sides before we got our current home), and moved. To end the year, I went on disability and was laid off from my job of 18 years. All this and more happened in what I’d call “normal” life, while the following happened medically.

When I would get home from chemo, Miss Kitty would be my nurse and make sure I wasn't alone.

The rising CEA I mentioned in my last post from oh-so-long-ago did lead to a recurrence. With Stage IV colon cancer it’s not a matter of if it comes back, but when. A brief re-cap of my CEA progress: My CEA hit a low of .9 May 3^rd, 2015. From there it slowly and steadily rose. I was still undergoing Maintenance therapy which consisted of Leucovorin, Avastin, and 5FU, and wearing the pump for 2 days after treatment giving me even more 5FU. By the end of October 2015, when the latest CAT Scan came back with everything being stable, and my CEA still below 2.5, I was taken off the pump. By December my CEA had risen to 2.5, and the Oncologist wanted me to get a PET Scan to get a better look at what was happening inside me. The insurance company said no, but they would authorize another CAT Scan. I fought as best I could for the PET Scan, being as I hadn’t had one since September 2014. The insurance company said that they only would authorize a PET Scan if the CAT Scan showed new abnormalities, or if I was diagnosed with a different type of Cancer. Basically, they would only grant the scan if I got worse, not as a measure to prevent me from getting worse. This really pissed me off. This was a scan that my Oncologist, Surgeon, and Primary Care Physician all agreed should be done for re-staging.

By the middle of January 2016 my CEA had risen enough that my oncologist put me back on full chemotherapy. This time it would not be Folfox, it would be Folfiri. Folfiri is a combination of Leucovorin, Ironotecan, and- the still aptly named- 5FU (Fluorouracil), and I would again have to wear a pump of for 2 days after the infusion was over. With this cocktail Avastin was replaced with Cyramza- a newer generation of Avastin. All of the old side effects came speeding back, and the Cyramza had a new one- flatulance. Yes, it is documented that Cyramza makes you fart- and fart all the time. There was a good and bad of this. The good is that for me, they were mostly funk-free. The bad- they were loud. I am sure there were times I was lecturing in my Art History class where the students heard something.

I was on Folfiri longer than I was on Folfox- approximately 8 months. The chemo brain was really hitting me hard this time, with my wife mentioning conversations that I honestly never remember having. In addition it was harder to just concentrate at times. The other side effect that seemed to get exponentially worse was the fatigue. I was constantly exhausted. Some days it was a struggle to get out of bed at all. In August the CEA had gone all the way up to 5.9. That’s really not that high relatively speaking, but it was rising while I was on chemo. This is where things got even scarier. Full chemo had always helped control my disease, and now it wasn’t. I was due for another scan, and this one showed one small lesion on my liver. Now we knew what was causing the problem. What the oncologist wanted me to do to fix it was something I had never heard of.

From left to right: Arya, Vincent, and Alice

The oncologist sent me to an interventional radiologist. What is interventional radiology? I’m glad you asked- because I had to also. Interventional radiology is a sub-specialty of radiology in which specially trained doctors perform minimally invasive procedures to diagnose and treat various diseases and effects of diseases- in this case the lesion on my liver. So I brought my latest scan to the interventional radiologist and he took a look. After consulting with my oncologist they determined that Radio Frequency Ablation (RFA) was the best route to go. RFA is where an almost boiling hot needle is inserted into the lesion, and then it and the surrounding tissue are burned away. They Dr. is guided by the procedure being done in a CAT scan machine so they can have pinpoint accuracy. It’s amazing technology! It also has a very high success rate- over 85%.

The oncologist told me that we’d have to wait a couple of months to see the full results, if there were any. He was wrong about that- my next CEA already started showing improvement. On August 17^th, it was 5.9, by September 7^th, it was 4.5, and on September 21^st it was 1.9. It worked! By December my CEA was untraceable (<.5)- the lowest it had ever been. I was off of full chemo and back on maintenance, and if things stayed this good, I was on my way to getting an actual break from chemo- the first one in the three years since my diagnosis. This was amazing news! I actually did get a break from chemo, but it wasn't what I was hoping for...

Part 2: The Diagnosis

To say that you’re never prepared to hear “You have Cancer” is an understatement to say the least. It’s been a while since I first heard those words, and my memory of what exactly happened at that moment is somewhat jumbled. I remember just about everything that happened, but not necessarily the order in which it happened; the brain is an amazing machine.

My girlfriend met me at the Dr.’s office to hear what I knew was going to be bad news- I just had no idea it was going to be as bad as it was.  When we got there, the Dr. told us that it was more than just a polyp with some cancer cells in it; that it had spread to my liver. We were dumbfounded and frozen. However my Dr. sprang into action and showed me that he was going to fight for me. He immediately gave me the name of the Oncologist he wanted me to see, and made an appointment for me the following Wednesday. I asked which surgeon I was going to see and he told me whichever could get me in the quickest and wanted to keep his business. He made an appointment for me with a surgeon, also on Wednesday (which was turning into the first of many long days of Doctor’s office visits). The next day his office called and said they had made an appointment with a different- but equally as good- surgeon for Monday. I have been very lucky in an unlucky situation in many ways- my Dr’s being excellent is the first I will mention.

As my Dr. was springing into action, I was still dumbfounded and frozen. My first thought was “I‘m going to die”, followed faster than I can type it by, “I don’t want to die.” The latter was a thought I would have, and still have repeatedly. It’s hard to express how you feel when someone tells you “You have Cancer.” You really do see that sentence being a sign that your life is over. You start thinking about all the things you wanted to do, all the things you thought you had time to do, and didn’t. You think of the people you love and how much it will hurt to leave them, and how much it will hurt them when you’re gone. We always assume tomorrow is a given. Cancer changes that in an instant. The funny thing is, outside of Cancer killing me, I still assume tomorrow is a given. I don’t worry about getting hit by a bus, or an asteroid, or any other of the myriad ways I could die; but everyday I have thoughts about Cancer killing me.