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 10: The End of The Beginning

So I was back on the regular Chemo Maintenance regiment- infusions every other week and then a pump for two days. The side effects from my “Adventures With Xeloda” were still lingering but getting better. Now it was time for a new adventure- marriage. We knew this was something that could survive the “better or worse”- though I will admit I hoped to get to the health part of “in sickness and in health” sometime soon. When we first started talking about marriage I joked about doing it in Vegas- and she agreed. So we planned our Vegas wedding in June (someone’s bright idea to get married in the desert in the summer!). We decided to have the ceremony at the Excalibur, and upon the suggestion of a friend, stayed in the Monte Carlo. Of course Cancer doesn’t care what plans you have, it does it’s own thing. My body, which had been valiantly fighting this disease for over a year started having issues again- incredibly painful bowel movements. Unfortunately this happened while my Oncologist was on vacation, so his office referred me to a gastrointestinal guy- the one I had used in the past couldn’t see me for two weeks, and I was in a lot of pain, and didn’t want to wait that long to be seen and get to the bottom of the problem. The oncologist’s referral got me in right away and he diagnosed me with an anal fissure, gave me a cream to apply, and told me to take Sitz baths twice a day. A Sitz bath is where you sit in hot water for 10-20 minutes and soak. After about 10 days things still weren’t getting better. I had an appointment with my back from vacation Oncologist and he told me to go see my surgeon. The Oncologist told me that he knows fissures are painful and that women have told him that having a bowel movement with one feels like giving birth.

The surgeon confirmed the fissure, but told me that part of the problem with a fissure is that the sphincter muscle goes into spasm, and that makes it even more painful. He gave me a different medicine to be applied internally and told me that 90% of the people who have a fissure get better with this medication. I wasn’t going to apply it barehanded, so I went off to find finger cots. Just picture something that looks like a condom for your finger. So I started applying the medicine 3 times a day. It’s in the middle of this that we went to Vegas to get married. The wedding was great with family and a few friends attending- small, intimate, and perfect. While there I also got to play poker at the World Series of Poker- just in the room at the Rio, not a bracelet event- though maybe someday… Despite everything I don’t think I’ve ever been happier than I was marrying my amazing and lovely wife.

When we returned from Vegas things were not any better for me physically- as a matter of fact they were getting worse. I went back to the surgeon, and he told me that with the chemo and stress I was under that a way to relieve the spasms that were causing the pain was to have a sphincterotomy. This is a “minor” surgery where they cut the sphincter muscle, which prevents it from going into spasm. It’s an outpatient surgery requiring one small cut and one stitch. The only risk was for fecal incontinence, which I was told is more common in women (whose sphincter muscle is not as large) and old people (whose muscles don’t work as well to begin with). The surgeon went on to tell me that he had not seen this happen to a man my age. I decided to have it done. It was a quick procedure with no huge preparation like my other surgery. I was in and out in a few hours, and told to rest for a couple of days afterward. For a few days, maybe a week, things got better; the pain was less, and my body seemed to be getting back to “normal”. Then the pain started again.

I went back to see the surgeon. A quick side note; it doesn’t matter how many times it happens, having a colo-rectal surgeon examine you is never fun or dignified. He said the problem I was having now was a skin irritation- basically an adult version of diaper rash. I asked him if there was something else I could call it since I didn’t want to go around and tell everyone I had diaper rash. He told me it was Moisture Associated Dermatitis, to which I replied, “You mean I have “MAD Ass?” He found this highly amusing (got to love a surgeon with a sense of humor) and asked if he could use that. I told him he could as long as I got credit. I got prescribed another cream to apply- this time externally over the irritated skin. I was also told no more Sitz baths as the moisture was the problem, and to use Desatin as needed to keep the area dry and try and prevent more irritation. Also, sweating was a problem, as that would also cause more irritation. Living in Florida, that did restrict things I could do, which is frustrating to say the least. The problem continued to come and go (alternating with extreme itching) for the next several weeks. It mostly got worse after chemo and the pump.

 In October I got my next CT Scan, and it showed that everything cancer-wise was stable. There was one lesion left on my liver, but it had not grown. With everything continuing to be stable the Oncologist discontinued the pump- I was down to infusions every 2 weeks and that was it. With this, my bowels and my ass started getting better temporarily which I am very grateful for. Unfortunately my CEA numbers were slowly, but steadily rising…

Interlude 3: Eternal Sunshine of My (Not So) Spotless Mind

I know it’s been a while since I’ve posted an update. Honestly, my concentration level hasn’t been there, and neither has my patience. While my story is not over by any stretch of the imagination, I’ve had a hard time continuing to write about it. The most recent news: I’m still in remission, and my latest CAT Scan showed only one lesion left on my liver (which has been stable for about 6 months), which is great news considering I was told that when I started that my liver was more disease than liver and looked like Swiss cheese. Since the liver regenerates, where there were lesions, there is now healthy tissue. Would it be better if the last one was gone? Of course, but I’ll take being down to one. More good news- the amount of chemo I get has been reduced (I no longer have to wear the cursed pump after the infusions- though they still happen every two weeks for three hours). Of course, things always seem to be a mixed bag. My CEA number has steadily risen and is now at 2.1. If it rises over 2.5 for two tests in a row I’m back on full chemo. So, while I’m trying to stay positive, it feels like that number, and full chemo is out there waiting for me. And while the physical problems are still vast and varied, it’s the mental ones that have been getting to me more lately. How do you keep your mind out of the rabbit hole of worry and anxiety about dying of Cancer and the effect that will have on those you love? How do you forget about Cancer, and remember to live your life?

“Eternal Sunshine of the Spotless Mind” is one of my favorite movies. It’s the story about a man (Joel, played by Jim Carrey) who after a painful breakup discovers that his ex-girlfriend Clementine (played by the amazing Kate Winslet) has undergone a procedure to have all memories of him and their relationship erased from her mind. Joel decides to undergo the same procedure. The film explores the intricacies and intimacies of relationships. A good deal of the film takes place inside Joel’s mind as his memories are being erased. There comes a point in his journey where Joel decides he doesn’t want to erase his memories of Clementine- that they weren’t all bad. He’s on his knees and screams: “I want to call it off! Can you hear me? I don’t want this anymore! I want to call it off! Is anybody out there?”

I know exactly how Joel feels. No, I haven’t had any memories erased; I was diagnosed in April 2014 with Stage IV Colon Cancer. I’ve been on Chemotherapy every two weeks for 18 months, with a break to have colon resection surgery. I’ve endured a string of at best uncomfortable, at worst incredibly painful side effects. Yes, I’m currently in remission, but as I’ve written about before, the disease is still there in my blood, like an internal Sword of Damocles. There’s barely a day that goes by where I don’t mentally yell those same words Joel did in the movie. “I want to call it off! Can you hear me? I don’t want this anymore!” It’s the pervading thought in my mind. It’s become my mantra. I wish I could have it erased. However, unlike Joel, I don’t have a choice about whether I want to do this or not. You can’t choose to not have Cancer once you do.

This has led me to wonder where I fit in the scheme of things Cancer-wise. On the one hand I do have Stage IV Cancer, and that’s real and serious and life threatening. On the other hand I’ve had a great response to treatment and am doing better than most in my situation. My Oncologist told me that they have protocols for people who do poorly, and they have protocols for people who are doing average. What they don’t have is protocols for people who are doing above average. One of the main reasons for that is it’s so rare to do well (though it’s getting less rare as more and more drugs are being created to combat this scourge). I am a member of a couple of online Cancer groups, and I see people on there who are doing worse than me in one way or another; bad reactions to the chemo, colostomy bags, no support, no insurance. That brings an odd combination of feelings: luck, fear and guilt. I’m lucky that I’m not them. I’m lucky to be doing so well in a bad situation, I fear ending up like them- or worse, and I feel guilty for not doing as poorly as others, and for not wanting to be like them. It’s an odd sensation to feel lucky about my incurable Cancer. In our house we call it being lucky in an unlucky situation. But it’s still Cancer. It’s still always there, and it’s very difficult to forget.

There are times I do forget what’s happening to me. Spending time with my wife, going to a movie, playing poker, swing dancing, and hanging out with friends are all things that even if only for a brief amount of time allow me to forget about this trauma that is Cancer and how it’s affecting me. These are good things. These are things I don’t want to forget, however I would like- with all of my being- to forget about Cancer. Unfortunately, like Joel, no matter how much I want to call this off, I can’t. Mary (played by Kirsten Dunst) from “Eternal Sunshine of The Spotless Mind” sums this up with a Friedrich Nietzsche quote: Blessed are the forgetful: for they get the better even of their blunders.” I never thought that being able to forget something would be so precious- even if it’s just for a little while. Now I know better.

Part 6: Progress and the Road to Remission

Eventually I got into a routine with the treatment and it’s side effects. Certain weekends became “chemo weekends” where you know you’re not going to be able to do much. It’s inconsistent- some days I could do a couple of things, and others there was nothing I could do but become one with my couch- which is very comfortable. Time passes strangely and I learned to deal with the effects of the treatment on my life. There are times of despair, and anger, but as I fought through those, I got used to the grind of treatment and the knowledge that I was going to have days where I couldn’t do anything but lie on that comfortable couch and flip between ESPN and HGTV and nap. Those 2 networks may seem like an unlikely pair of places for respite, but they’re really not. I’ve found them to be the best escape for me on long “chemo days” as both rarely have any mention of Cancer on them (though when Stuart Scott died of Cancer I laid off ESPN for a few days). On other networks, there always seems to be Cancer somewhere. Just watch TV for a while and see how many shows have at least a mention of Cancer- and then there are commercials for Cancer treatment and treatment centers. Every time Cancer would come up, I’d turn to my girlfriend (if she was with me, if not I’d say it to myself) and say, “It’s always fucking Cancer.” Like I need another reminder of what’s trying to kill me.

When you have Cancer, they track your progress, and the success (or lack there of) of your treatment by blood tests and scans. The Carcinoembryonic Antigen (CEA) is a blood marker that determines the amount of Cancer in your system. In a healthy person the CEA is a number between .1 and 2.5. A smoker can have up to 5.0. A CEA number over 5.0 indicates Cancer. The first time they tested me my CEA was 354.4. I had CAT Scans on my pelvis, abdomen and chest done when I was first diagnosed as routine tests after they found the tumor in my colon. I had an additional CAT Scan with contrast (barium sulfate), which identified the size and number of legions prescribed by my Oncologist. The contrast comes in several different flavors, and I really didn’t mind the taste of them. I had to drink one (rather large) bottle of contrast 2 hours before, and another one hour before the scan (I had one banana smoothie and one vanilla smoothie flavor). You also have to fast for 4 hours before the test. When the time comes for the scan they inject iodine into you to contrast the barium sulfate. When they inject the iodine you feel like you have to urinate, and are warm all over (thankfully not from actually urinating on yourself). This first scan is used not only to identify size, number and placement of the legions, but it also serves as a baseline of comparison for future scans to again indicate the success (or lack there of) of the treatment you are getting. After beginning treatment I was told that at 3 months I’d get a PET Scan to see how the treatment was working. While a CAT Scan shows legions, they do not show whether those legions are cancerous. A PET Scan not only shows the legions, but they inject you with radioactive sugar that literally lights up a legion on the scan that is cancerous. My first PET Scan showed the Cancer in my colon and throughout my liver. My girlfriend and I epically miscalculated that getting to the PET Scan meant that I would be done at that time. Ignorance truly is bliss. My Oncologist would later tell me that in this first PET scan my liver “lit up like the sky”.

I got lucky in an unlucky situation with my response to the treatment. After one month of chemotherapy my CEA number dropped from 354.4 to 115.8. The next month was down to 37.7, then 25.4, and then magically, after 5 months I was under 5 at 4.2. Under 5.0 means remission, however remission doesn’t mean what most people think it does. For Stage IV Colon Cancer, remission means that the Cancer is now on a cellular level- there are Cancer cells floating through my body, but no tumors. The Oncologist also told me at this point that under 20% of Stage IV Colon Cancer patients get their number that low- reach remission. Around this time I had my second PET Scan, and that reinforced the CEA results, that I had no tumors. My Oncologist wanted my number below 2.5 to then do surgery to remove what was left of the tumor in my colon and the area around the tumor. The idea being that even if the tumor was mostly gone, the site of the original tumor could still be producing more Cancer cells that would circulate through my body and possibly attach themselves somewhere and grow into non-treatable tumors. They didn’t do surgery when I was first diagnosed because my liver was so compromised, and it’s a vital organ, so it was more important to try and get rid of the Cancer there through Chemotherapy, than remove the tumor in my colon. The Chemo would also shrink the tumor in my colon if everything went well, which it did. Two months later my CEA was down to 2.1, and I made the decision to have surgery.